vol. XIX, no.1, October, 1998
Baby in Need of Adoption
From Teri Bell, Americans for
International Aid and Adoption:
Over the years, you have helped me
get the word out on children with arthrogryposis around the world
who are in need of families. Once again, I need your help. On a
recent trip to Russia, I identified two children and they are ready
for placement. I will attach information on one of them, Artom,
b. 3/20/97. This beautiful little boy was born with arthrogryposis
(a genetic disorder that significantly affects the joints of his
body). This little guy is a fighter and a baby with a great deal
of spirit. Despite his resulting disabilities, he plays with toys,
and charms everyone who sees him. Although he is sensitive to strangers
entering his space, he has wonderful smiles for his caretakers and
the people he has become comfortable with. In every way that is
possible for him physically, he is age appropriate. He is responsive,
bright, and alert. He rolls over to get to the objects he wants
to play with, is babbling and just beginning to form words. His
hands are less affected than his legs which cross over completely
at the knee area. He is able to use, or move the fingers on his
right hand so that he is able to reach out and manipulate some toys
enough to grab them and play with them. He has some very special
needs, but no one has told him yet.
There is yet another little guy with arthrogryposis
in Russia. His name is Sergey and he was born on 1/17/98. I do not
have as much information about him at this time however. For more
Americans for International Aid and Adoption
877 S. Adams
Birmingham, MI 48009-7026
(248) 645-2211 general information
(612) 687-0259 or firstname.lastname@example.org
for child specific information
[back to top]
The new contact for the Arthrogryposis Clinic in
Seattle is Shannon Coleman, Patient Care Coordinator, Children's
Hospital and Regional Medical Center. Shannon's telephone number
is (206) 526-2180.
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23409 Gilmore St.
West Hills, CA 91307
e -mail: PVPetersen@aol.com
I am the mother of a beautiful 2 1/2 year old
girl who was born with arthrogryposis. I am currently finishing
my Master's Degree in occupational therapy at USC and will be a
practicing therapist, with an emphasis in pediatrics beginning in
December 1998. I am interested in forming a support group for families
of people with arthrogryposis. I would like to arrange to meet with
other family members in the Southern California area. If you would
be interested in joining a support group please e-mail me.
[back to top]
AMC Bulletin Board
Out of Service
The AMC Bulletin Board coordinated by John Sneddon
on the Internet, is temporarily out of service. The providers of
the Internet site have apparently ceased operations. John is currently
seeking a new host site. In the meantime, he can be contacted at
email@example.com. John is still hosting on-line chats. Chats are
held every Sunday evening starting at 9 PM EST. For complete information
about how to connect to these chats, visit the webpage: http://members.aol.com/xetro/amchat.htm
Two surveys on aspects of AMC have been placed
on the Internet by John Sneddon. One deals with aspects of aging
and AMC and the other focuses on the challenges of motherhood for
women with AMC. The surveys can be found at:
If you do not have Internet access from home, try your local public
[back to top]
Genetic Aspects of
Department of Pediatrics
Eccles Institute of Human Genetics
University of Utah
My name is Mike Bamshad and I am a pediatric geneticist.
Over the last few years, our lab has been working toward identifying
genes for multiple congenital contracture disorders. Given the recent
correspondence in this forum about the genetics of arthrogryposis
and AMC, I wanted to try to clarify a few points.
Arthrogryposis is somewhat arbitrarily defined
as non-progressive limitation of movement in two or more different
body areas. Thus someone with bilateral clubfoot may not be classified
as having arthrogryposis, while someone with a clubfoot and hip
contracture would be labeled with arthrogryposis. Thus, this term
is only a description, and a somewhat non-specific one at that.
Note also that geneticists, orthopedic surgeons, and pathologists
often use the term differently.
As many of you have noted, the term arthrogryposis
encompasses more than two hundred different diagnoses. For many
of these disorders, arthrogryposis is a feature, but it is certainly
not the major cause of problems or a fundamental component of the
disorder. For example, children with Trisomy 18 (3 copies of chromosome
18) or some neurologic disorders (e.g., myotonic dystrophy) may
have multiple congenital contractures at birth. Yet, it is clear
that these disorders are not primary abnormalities of connective
tissue such as bones, tendons, and muscle.
On the other hand, for arthrogryposes such as the
"distal forms," it appears much more likely that these
are due to abnormalities of connective tissues.
For many arthrogryposis disorders, it is unclear
what is the primary abnormality. This is one of the active areas
of investigation. That is, many physicians and scientists are trying
to determine how to differentiate between these disorders based
on clinical features and findings.
So how does this help clarify the confusion about
inherited and non-inherited forms of arthrogryposis? Well, by making
a definitive diagnosis, much more information about the cause and
inheritance pattern may be learned.
To continue with the above example, some disorders
in which arthrogryposis may be a feature (e.g., myotonic dystrophy)
are inherited. Other conditions associated with arthrogryposis (e.g.,
Trisomy 18) are present at birth (i.e., congenital) but are not
inherited. Additional findings in these disorders usually point
toward a specific diagnosis, but not always. By making either of
these diagnoses, much more specific information is available to
People using the term arthrogryposis do not always
draw distinctions between a more specific diagnosis and the use
of the term as a definitive label. However, many children and adults
with "arthrogryposis" do not have a more specific diagnosis.
So are there inherited and non-inherited forms
of "isolated" arthrogryposis? There are a substantial
number of disorders in which multiple congenital contractures are
the primary findings. Many of these disorders appear to be sporadic
but are hard, if not impossible, to differentiate from each other.
Sometimes there are multiple individuals within a family that are
labeled with arthrogryposis, but they have no specific diagnosis.
Therefore it is challenging to draw definitive conclusions about
the mode of inheritance, the range of clinical variability, and
the natural history of these disorders.
There are also disorders (e.g., distal arthrogryposis
type 1, Freeman-Sheldon syndrome) that are clearly inherited, but
can be difficult to diagnose in the absence of an affected relative
(i.e., a positive family history). Thus, there are X-linked, autosomal
recessive, and autosomal dominant disorders causing multiple congenital
Moreover, a substantial portion of the population
of individuals with arthrogryposis are told that they have AMC or
amyoplasia. Again here, it appears that there are multiple causes
for the same types of problems.
Most families have only a single individual with
AMC or amyoplasia. However, it is clear that there are some families
having more than one child with AMC, and thus there may be a single
gene that is causing the arthrogryposis in these families. It is
less clear how to differentiate these families from the ones in
which AMC appears to be sporadic.
What about reduced fetal movement and arthrogryposis?
Any process, event, or structure, which results in reduced fetal
movement can also produce multiple congenital contractures. Many
of these events lack a genetic component. For example, a woman with
an abnormally shaped uterus could have a child with congenital contractures
due to the cramped intrauterine environment. She may even have more
than one child with multiple congenital contractures, yet this is
not because she or the child's father are passing on a gene(s) causing
the contractures, but because the movement of both children was
restricted because of her uterine abnormality.
Sometimes it is difficult to determine if a process,
event, and structural abnormality is the cause or if a child has
a sporadic or inherited cause of multiple congenital contractures
as described above.
What about the genetics of primary multiple congenital
contracture disorders? To date only one gene responsible for a primary
multiple congenital contracture disorder (congenital contractural
archnodactyly) has been cloned. For others such as distal arthrogryposis
type 1 and a variant of Freeman-Sheldon syndrome, we know the crude
genetic location, but have yet to identify the gene.
Clinical genetic testing for these disorders is
not available, and research testing is limited by the informativeness
of families (i.e., size, # of affected individuals). Prenatal diagnosis
via ultrasound examination is certainly possible, but not 100% reliable
(indirect genetic testing would not be 100% reliable either). A
few scientists are working toward cloning these genes but it has
been slow due to the overlapping features of many arthrogryposis
disorders and the availability of large families with arthrogryposis
disorders. This is changing.
Additionally, the advances and resources emanating
from the Human Genome Project are making novel gene-identification
strategies much more feasible.
Re-printed from the Arthrogryposis
Discussion Group with the author's permission.
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From Families Around
& Stephen P. Burke
8238 11th CT. SE
Olympia, Wa 98503
Since we have written last time in Avenues newsletter
a year and a half ago, we have received over 50 letters requesting
information about the dressing stand Seattle Children's Hospital
had designed and also, the new polypropylene day splints made for
I have tried to keep up with all the requests,
but found it an expense to send out color printed zerox copies of
the photo's of these. I would like to request that all future requests
for this information be enclosed with $3. along with a self-addressed
stamped envelope, to help cover the cost of printing these out at
An update on our daughter, Josepha, who will be
turning 5 in Sept. (We will have a webpage on her up in another
month). She was seen at the Arthro. Clinic in Seattle, this past
Spring, and they have found she now has full rotation in her shoulders,
and is fully able to bend both elbows and bring her hands to her
mouth independently. We installed a swimming pool 2 years ago, and
believe this has been a significant aid in strengthening her arm
and shoulder muscles. I recommend a swim program for therapy.
Josepha is able to completely dress herself and
buckle or tie her own shoes. She can take care of her toileting
needs independently as well as brush her own teeth. She can color,
draw and write better than the average 5 years old, and can feed
herself with no problem, with the help and assistance of a backrest
on her chair. She is now able to pick up any size glass to drink
from. We started with a very small shot size glass that she could
grasp with one hand, and worked our way up to larger glasses. I
noticed at the beach the other day, she is able to carry a large
bucket of water up the beach and dump it. Somewhere early in her
4th year, she became less hesitant and fearful of doing things involving
large motor skills. She has become more fearless in this area, along
with speed in climbing, and running. She just recently learned to
master swinging on a disc swing, holding on with no back support,
and sitting upright.
We recently enrolled her in Sunshine Generation,
a children's singing and dancing company. She continues to wear
night splints; however, I have found it hard to keep them on her
at night. I usually find them on the floor in the morning. I have
tried different incentives on her to encourage her to keep them
on , with only some success. Any ideas?
She is at an age in which she loves using the mouse
on the computer and does very well. She is also at an age where
she is able to exercise her arms on her own because she wants them
to grow stronger. She plays along side of her year older sister
and sometimes notices the differences in their capabilities. That
actually encourages her to exercise. One of the exercises we have
been encouraging is to eat 3x's with her left hand at every meal,
since she prefers her right. This has strengthened her left arm
to the point that she often feels as comfortable using it now as
much as her right.
Being raised in a family as youngest of 5 children,
has given her a lot of reasons to want to keep up. She never wants
to be left behind, and usually insists on doing things for herself.
Recently she has learned to open our sliding van door, and climb
in, hooking her own belt on her carseat. That's an example of how
she tries to keep up.
I appreciate hearing from so many of you and was
happy to share the video I made-up of her in different stages of
development. I hope it has helped. Josepha was adopted, and we chose
her to be a part of our family, born with this condition. We made
the decision to take on arthrogryposis, and prepared and planned
for her acceptance into our lives, and therefore, see ourselves
a bit differently than those of you who were taken by surprise over
this condition. I knew ahead of time, and prayed to God to be the
kind of parent this child needed to gain independence. I was not
as great of mother in that area to my other children, but was given
the insight beforehand to know that would be my approach for this
child. I have to tell you, Josepha is one of the brightest jewels
in my crown as mother. She is especially gifted and loved, and although
it has been extremely hard at times, to hear her tantrum over frustrations,
I have had to allow her these times, in order to grow. She sees
herself as an angel-helper to God to allow others to see his love
through her life. I believe this is true of all who have been chosen
to live "differently" than the norm in this world.
40 Corstorphine Park Gardens
Edinburgh EH12 7HJ
Hello, my name is Clint Stark. I live in Edinburgh,
Scotland. I have Arthrogryposis Multiplex Congenita. I have had
14 operations, 11 to my arms and 3 to my spine. I have been in and
out of the Princess Margaret Rose Orthopaedic Hospital. I have had
five shoulder fusions and also three major spinal fusions. I had
halo traction on for 9 months when I had my spinal fusion. If I
can help anyone feel free to write or e-mail me.
1490 Queen St. W
Brampton Ont. Canada
Hi, my name is Miriam Osborne. I'm in Grade 10
and will be turning 16 soon. I have Arthrogryposis and Scoliosis.
All my life, it hasn't really been a problem for me. I can walk
with the help of braces and I don't have much use of my hands. The
reason it hasn't been much of a problem is because I don't let it
be. I work around it. I'm in Drama nights at my school, I was involved
in the vocal Jazz groups and I write for the school newspaper. I
plan to be a Journalist.
Before I tell you my problem, let me give you a
little bit about my background. I was wearing braces on my legs
on and off from when I was three until I was eleven, and I've been
wearing them constant since. I also wore splints on my hands from
when I was born until I was twelve. The doctors told my parents
that I wasn't going to ever walk, so I was in a wheelchair for two
years, (4-6) but I had an operation on my legs and I now walk. (I
always prove the doctors wrong). I broke my arms eleven times and
sprained them twice when I was between the ages of 4-12. I haven't
broken them since (knock on wood).
Now for the problem. One morning, in December,
I woke up to a very sharp pain in my back, (I have always gotten
cramps in my legs but never in my back). It was really sore so I
stayed home that day. No big deal. It didn't get much better after
that but I didn't take any more days off until some day in March
because I tried to ignore it. The second day I took off, it was
really sore, more than the first. At our school we have three floors
and an elevator. I hate the elevator. It's so small and old, so
I always use the stairs, and it hasn't been a problem. Until now
because my mom thinks, with the weight of my bag, and the stairs,
it isn't exactly going to help my back at all so I try to use the
elevator a bit more. My parents started getting a little worried
when every day my back would hurt, and I started getting massive
headaches. I just thought if a take tylenol, it would be fine, but
now, for the past few weeks, I'm starting to get chest pains and
I'm getting tired quite easily. (I'm a pretty active person).
About a month ago, my mom said that I have to go
see the doctor. I didn't want to go. I hate going to the doctors.
So, when we got there, I told my doctor about my back, but not my
chest because that started after. Now, the thing that kind of bugs
me about going to see this doctor is that, he doesn't know much
about Arthrogryposis. He told me that I'm his only patient with
it. (I always liked being original) But as the appointment went
on, he started saying things like maybe if I didn't walk as much
it wouldn't hurt as much. Then he said 'how about a wheelchair,
oh don't worry, only for a couple of months' And my mom agreed.
I said NO WAY!
Now, please don't think that I'm just a stubborn
teenager who doesn't know what's good for me, because I do, more
than anyone. And I know that I would never be able to survive in
a wheelchair, and since I can't use my hands much, it would be a
push wheelchair, and I would not want someone pushing me around
all the time. After that appointment, I decided I wasn't ever going
to go to another one again. As much as my parents think it would
be best for me, they have respected the way I feel. I don't complain
about my head, back and chest much anymore. Not because it doesn't
hurt, but, I don't want to hear my mom saying that I'm making it
worse quietly under her breath. I bought myself some tylenol for
school although, it doesn't work much. What should I do? Please
E-mail me at firstname.lastname@example.org I want to once again prove the doctors
I'm really glad I found this support group. I
have a 7 month old son diagnosed with AMC. His doctors did an MRI
shortly after birth and found that he had experienced an in-utero
stroke. They also noticed that he had an abnormal pituitary gland,
which means he will be taking synthetic hormones, including growth
hormone. I have read the Avenues newsletters, and am new to the
Internet, but from what I have read, this is not a common multiple
diagnosis. I recall someone mentioning their child having small
stature, and I am wondering if any of you have had MRIs of your
As far as my son's AMC condition, he has bilateral
club feet, with slight contractures in his wrists. He has weakness
in his shoulders and arms, but is able to bend his elbows and bring
his hands to his mouth. I am hopeful that he will be able to feed
himself on his own. Andrews hips are in good shape, although he
may need some releases in his knees. They are slightly contracted.
The doctors at the orthopedic children's hospital in Dallas have
recommended that we forego casting of his feet, saying that it is
not worth my time, and would rather perform surgery on his feet
when he is able to bear weight on them. This has been distressing
for me, as I have read so many cases where casting is being done,
but the doctors have said that the contractures have a high rate
of reoccurrence after casting in AMC cases. Any insights on successes
or failures of casting?
1825 East West Rd
Honolulu, Hi 96822
(or you can send mail to my parents at S.R. Box 111
Hana, Hi 96713 (808) 248-8972).
Hi! My name is Nalini H. Blumer-Buell, and I have AMC! I believe
that my parents John, and Christel sent a letter from Hana a few
years ago, and I wanted to give an update. I am now a 22 year old
Senior at the University of Hawaii Manoa in Honolulu. I have decided
to major in English, and plan to graduate in two years. I live by
myself in a dorm, I drive a scooter, but can walk short distances.
Aside from school, I am president of the dorm activities council,
and an active member in the church choir. I enjoy reading, writing,
singing, swimming, and having fun. I would be interested in hearing
other people's story of college success, and also what they did
after college. I am getting to the point where I am thinking about
the next step.
3 Plessey Crescent
I am writing for further information to help my
son Jonathan who is 8 years old. Jonathan was diagnosed at about
7 months old. Mainly, his arms, wrists and hands are affected, although
he also had a right sided talipes. Despite having almost no arm
movement at birth, he has progressed remarkably with the help of
daily physio and occupational therapy, leading to an almost independent
life, although the lack of muscle tissue in his arms means these
are weak with restricted range of movement.
He has had operations firstly to correct his foot
and to reposition his thumbs in a more functional position. His
latest operation attempted to extend his left wrist tendons to help
the curvature and movement of his wrist, but was unsuccessful.
Despite nightly splinting and physio, both wrists
remain curved and although function they cannot straighten or rotate
upwards. Jonathan's consultant is discussing a rare form of surgery
to remove the fused metacarpals in the hope of achieving a greater
range of movement. I understand this form of surgery has not been
carried out in Britain where this condition is very rare.
Jonathan is happy to have further surgery if it
might help him, but before agreeing, we would be grateful for any
information Avenues may have on this type of surgery, or contact
information with anyone who has had similar treatment.
I see from your leaflet that there are specialist
centres dealing with arthrogryposis, do you know if they take overseas
referrals for a second opinion?
On a more general note, we have had great difficulty
in finding information on this condition and found a general lack
of understanding from many medical professionals in this country.
In Britain this condition affects 1 in 55,000 live births. This
is far fewer than than 1 in 3,000 in your leaflet. Has there been
any research on this that you know of?
& Christine Thompson
15618 Willow Dr.
Fontana, CA 92337
The reason for this letter is to ask for help.
My son has AMC he is doing quite well but something has piqued my
interests. The area in which I live is in close proximity to a hazardous
chemical dump and we have reason to believe this may have contributed
to the cause of my son's condition. Normally I would not make any
connections but across the street from my home there is a family
that two daughters with very much the same conditions as my son.
What I need from you is if you know of any other
cases of AMC close to a hazardous dump or Superfund site. The area
in which I live is Fontana, California. Any information you can
give me would be helpful.
I had written you last summer about my daughter,
Erin. She was diagnosed with arthrogryposis when she was about 4
months old. She has since had surgery for her clubfeet. Surgery
was successful. She now wears braces on both feet. Erin is no longer
wearing braces on her hands. She has been treated at Shriners Hospital
in Spokane Washington. Our Doctor, Doctor Ron Ferguson, has been
very impressed with her. They cannot believe how much her hands
have improved! They believe she will have almost full normal function,
and will be able to do most anything! I will try to keep you updated
on our success!
My name is Marina Sadikoska and I have a friend
whose daughter has AMC. I would like to offer my translation and/or
interpreting services in the Macedonian language (one of the former
Yugoslavian languages). I'm a member of the American Translators
Association (ATA) since 1995, and am registered court interpreter
with the Administrative Office of the Courts (AOC) of New Jersey.
I could also do telephonics. Of course, my services will be free
of charge. I'd be glad to help.
224 North Mary Ella Avenue
Panama City, FL 32404
(850) 871-2915 (H)
I would like to tell you about my daughter, Kacy.
Plus I'll share a few secrets that we learned the hard way. Kacy
Lynn was born July 10, 1992, after a full-term pregnancy, which
was uneventful. She was born C-section, as ultra sound showed she
weighed as much as my first child, who was too large to be delivered
Initially in the delivery room, the pediatrician
advised that Kacy had club feet, at which point everybody left,
leaving mom on the table by herself to cry over the news. (In need
of that sensitivity training.) Later, an orthopedist came to my
room and stated that Kacy's feet had been put in casts and she had
the worst club feet he had ever seen! (More of that sensitivity
Anyway, Kacy and I went home in a day or two, and
it was immediately obvious to me that other things were wrong as
well. Kacy's body was soft (muscle atrophy) all over; she folded
like a book at the waist if you weren't holding each side down (must
have been utero positioning). She did not bring her hands up to
her mouth to console herself. They simply hung down to her side;
and she cried continually. It would take her approximately 45 minutes
to take a couple ounces of formula and then she would fall asleep.
I called the pediatrician's office with my concerns, to be told
"Oh, she'll start moving! And "She probably has colic"!!
At Kacy's two week check-up, after being examined
by the pediatrician, the doctor stated, "Well, she's really
not moving like you said!" Also, Kacy had lost a pound in weight.
Kacy was referred to a neurologist and an occupational therapist.
At the occupational therapist, we learned that
Kacy's tongue was working; however, her lips were not, and she was
unable to form a suction around a nipple, with very weak sucking
capability. This was why Kacy was crying all the time, she was starving!
When she tried to get formula she would try her best, only to fall
asleep in exhaustion. So, first thing we needed to get preemie nipples,
which you cannot buy on the market. We were able to sweet talk a
few out of the hospital nurses. We then made the holes in the nipple
bigger with a hot needle, so basically the formula poured out. We
would position Kacy more upright so that she would not strangle
when feeding. Also, when feeding with the bottle, you would take
your thumb and fingers to pull Kacy's cheeks/lips around the nipple
to assist in trying to form a suction seal. (This sure beat the
heck out of feeding her with an eye dropper, which I had finally
resorted to in order to get nourishment in her.)
Next, the neurologist ordered an MRI... [The] MRI
revealed an atrophy on the front left lobe of her brain. After reviewing
the results, the neurologist referred us and Kacy to the Ochsner
Clinic in New Orleans...
During this time also, we had to take Kacy to the
orthopedist every Friday to got a new set of casts on. They would
stretch her feet as far as they would go, then cast them that way.
Kacy would cry so. They tell you that babies just don't like to
be touched, that it's not really hurting that bad. One time, my
oldest daughter came with us. She said, 'Mommy, Kacy is so red",
as she was crying. Then next, she says, 'Mommy, Kacy is turning
BLUE!!!" The "stretching" of Kacy's feet was so painful
that her body had shut down breathing. The doctor had to immediately
stop what he was doing and begin massaging her body to get her breathing
...after so many tests, the serial casting of her
feet and the club feet surgeries, you could not hug Kacy. She would
immediately start arching her back backwards for you to release
her. She associated human touch with pain. It took a 2 to 3 years
of continual love and good touching before she would allow you to
love on her...
Oh, let me tell you the secret for removing those
casts!!! We had to soak Kacy's casts off every Thursday night before
we went to the orthopedist on Friday to get a new set...The secret
is: Add Vinegar to the water! This helps break down the casting
materials. Also, when the orthopedist is applying the casts, have
him/her leave you a handle! By this I mean, when he/she gets to
the end of the gauze they are wrapping, have them make a little
ball, then place it on the cast, making a little nub on the cast.
This gives you an end to start working with when you start unraveling
the material when it comes time to soak them off. Otherwise, the
doctors smooth the casts out and you have no idea where to begin.
With the combination of these two, it will save you a lot of sweat
Anyway, we went to the Ochsner Clinic, (one of
the best hospitals), and after three days of all kinds of testing,
many of which were not very nice, we were informed that Kacy has
Arthrogryposis Multiplex Congenita. Finally, there was an awful
name to what was wrong. We were told that an unknown event had occurred
while I was carrying Kacy, which stopped her from moving, [causing]
the deposits, the atrophy, etc., as well as... the atrophy on her
brain. Further,... the nerves [in Kacy's neck] were messed up, as
the right side did and does not work as well as the left. Kacy's
jaw only had a ROM of 15 mm, her right wrist would only go straight
and no further. She was very stiff and hard to move...
Next, we went to the Shriner's organization for
Kacy's orthopedic problems and, at approximately 6 months of age,
they accepted her. The doctor also told us that we could quit serial
casting. Thank Heavens! Kacy had her club feet surgeries when she
was approximately 8 to 9 months old. They only do one at a time
because it is so painful for the child.
After Kacy was born,I began to look for a daycare
facility. Initially with Kacy having casts on her feet, not a center
would touch her with a ten foot pole. Liability. They were too afraid.
Even the HRS approved caregiver who tended children in her home,
said that she would try Kacy, but if she took too much time (because
of the eating), she would have to tell me to take her back... Finally,
Kacy is now attending a typical daycare center and has blossomed
so much since going there. She has to pretend and play, walk, etc..
She had only been with special needs [children] all day, now she
was learning from other children and they from her!
From birth to three, Kacy was in Early Intervention,
receiving PT, OT, and PT each three times a week. When she turned
three and went into the school system, she received PT, OT, and
PT three times a week at school, as well as,...privately three times
a week... As time went on, Kacy developed asthma and epilepsy. She
has been in the hospital so many times for various surgeries; ear
tubes, asthma, seizures that were very long, until I have lost count.
One recent surgery that Kacy had was the removal
of two salivary glands on the bottom and two that were tied off
on the top, to help control the drooling. . If anyone has had experience
with this surgery, I would like to hear, especially about what,
if anything to expect in the future.
... We have been told that there is no problem
with Kacy's jaw joint itself, but rather it appears to be a muscle
problem. I worry about her adult teeth coming in, as I believe this
will make the jaw opening even smaller. We can barely get a flat
spoon in now. Would that mean we would have to come up with other
ways to get food/nutrition into Kacy? Anyone with any information
..Apparently as a result of the atrophy on Kacy's
brain she is unable to talk. She attempts to and if you have been
around her a lot you can understand that she is repeating the word
you have said. After Kacy reached Kindergarten, it seemed to me
that not enough attention was being directed toward her communication
skills. It was suggested [that she use] a picture book, a ring with
pictures hooked onto her person. Then we got the Dynavox (the large
one). However, ...[Kacy] would have to go back to the location of
the book, ring, etc., get teacher, caregivers attention, then start
pointing... I decided to learn sign language to teach Kacy. Kacy's
fine motor is not so wonderful and her left side works better than
the right, but she is smart as a whip. What she was able to do may
not be a perfect sign, but as long as she would be able to tell
her family, teachers, caregivers, what she thought, it would be
a success. I also adjusted Kacy's IEP at school and am proud to
announce that she is picking up a lot. (Teachers are too!) She...is
starting to communicate needs and just plain ol' conversation about
what she sees!
Kacy's physical progress has been wonderful. She
learned to sit at 18 months, and she would roll around on the floor
everywhere she needed to go. She gradually began to bear weight
on her feet and finally began taking steps when she was almost 5,
last year. Now, her balance is continually increasing and she walks
all over the place. She is unable to get up from the floor right
now, but I'm sure that will come...
A couple of things for those brand new parents.
One, get yourself a Day Planner to keep up with all the appointments
as well as the phone numbers of all doctors. Keep ongoing/current
medical records for the child (which you should always have whenever
you go somewhere). And number three, take a break from your child.
If you have a family member who can come sit for a couple of hours.
Don't try to be Super Person. So take a break because it is very
One more thing, when your child is in the hospital
you are still the parent, so you are due an explanation of what
is to be done to your child before they just take her away, and
if you don't think something is not right with your child, you have
the right to insist that the doctor be contacted and advised of
your concern. You as the parent know your child best, have educated
yourself about conditions, and are very much a team member in the
care of your child.
& Clyde McPherson
3231 Heritage Cir. #6
Augusta, GA 30909
My daughter Ebony was born on 3/16/96. She has
been the light of my life since day one and her brightness and loveliness
shine in spite of her arthrogryposis. She has been through three
surgeries so far, and hip surgery lurks somewhere in the future.
Both of her upper and lower extremities were affected, but thankfully
only her fingers were slightly contracted. She has just recently
been fitted for steplock KAFO's and will be getting a walker soon.
We were told by two different orthopedic surgeons that she would
never walk, but she can now stand with very little assistance and
her present orthopedist feels she will walk with the aid of orthotics.
I think the hardest part has been the isolation. It's been heartbreaking
to see Ebony watching other children run and play outside. I'm hoping
to meet other parents with children her age with AMC so that maybe
we can get them together. All that I'm sure of is that her strength
and determination are nothing short of amazing and I have a lot
to learn from my daughter.
4234 Manhattan #2
Brunswick, OH 44212
I have a 20 month old daughter (born 9/30/96)
with a number of medical challenges. She has been diagnosed as having
Pierre Robin Sequence or Pierre Robin Anamalad. She had several
questionable seizures/spasms within the fist week of her life but
they stopped without medication. She has micrognathia although her
chin seems to have grown out in the past year. She has low set rotated
ears and has had recurring ear infections. They have discussed putting
tubes in. She did have severe breathing difficulties her first year.
She was hospitalized 3 times for aspiration. In the past year she
hasn't had any of the difficulty breathing. She has very minor glossoptosis.
She is moderately nearsighted and was recently
fitted with glasses. Her cleft is vaguely U or V shaped. She has
had a g-tube for over a year now and has not taken anything by mouth
in over 4 months. They have only recently scheduled a modified barium
swallow. She had bilateral hip displaysia. Her hip adductors were
tight. She had tendon nicks on both hips. She went through 4 months
in a Pavlic harness, 3 months in a traction, and 5 months in a spica
cast. The left hip is slightly behind developmentally. She stayed
fisted with thumbs in and hands near her face for several months.
She has a butterfly vertebra at T4.
Her chromosome tests were interpreted as normal.
She also saw a neurologist-- he also interpreted her results as
normal. Our previous plastic surgeon wondered aloud about her possibly
having microcephaly after seeing her for less than 5 minutes. He
did not examine her cleft during the visit. She sees an occupational
therapist, physical therapist, speech therapist and home based educator
through the Board of Medical Retardation and Delayed Development.
The plastic surgeon told us that she is a virtual vegetable, would
never walk, talk or eat by mouth, would never do anything independently.
He also denied our requests for referrals for evaluations and testing--saying
that it would be a waste of insurance money.
My daughter does babble on occasion, does respond
to sound and reaches for toys that make noise or have lights. She
can also stand briefly with support. She wears a wrist brace to
lesson the flexion in one wrist. she also sits in a therapy chair
to learn to control her neck muscles. She will begin using a supine
board in July.
Her crainofacial team consists of a pediatric plastic
surgeon, ENT, speech pathologist, audiologist and pediatrician.
She also sees an orthopedist, pediatric, gastroenterologist, ophthalmologist
and a nutritionist. None of our providers has helped us get information
about her problems. I hope you can help us with information on your
specific discipline. Brochures, fact sheets, links on the web or
even a referral to another source would be greatly appreciated.
5720 Crystal Lilly Ct.
Las Vegas NV 89130
Fax: (702) 658-9016
Hello! I first introduced myself to Avenues readers
in the January 1997 issue. I want to thank the readers who responded
to my letter. In addition to the health problems (ie. mobility and
respiratory) I already had recently suffered a serious head injury
this past June which resulted in a 2 week hospital stay and some
short term memory loss. I am doing much better now.
The reason I'm writing is because while I was at
the hospital the doctors came up with the weirdest thing. They said
I have a disease (actually, a history of this disease) called moya
moya which is what caused my AMC. I have NEVER heard (I'm 25) of
such a thing.
I've tried to look this up but have been unable to find anything.
As many of you know it's difficult enough to even find any information
on AMC. Has anybody information any information on this? I am desperate
to find out.
& Carol Stauffer
220 Greble Rd.
Myerstown, PA 17067
Our daughter Larissa, now 9 months old, was born
with Distal Arthrogryposis. She had severe club feet, which were
corrected with surgery at 4 months, after a series of castings failed.
She now wears a MAFIO brace on both feet. She is in her walker and
gets around real well. Her hands are contracted at the wrist and
her fingers are long and thin. At birth they were bent over the
others, but with lots of occupational therapy they are now flat
and straight. She uses her hands and fingers almost as much as a
normal child would. She seems very sharp and catches on very fast.
The only area that was affected by Arthrogryposis is her wrists
We know very little about Distal Arthrogryposis
and welcome any information, solutions, and correspondence with
families that have a child with Distal Arthrogryposis. It seems
that it's not a very common problem and lots of doctors were never
exposed to Arthrogryposis and do not have very many solutions. Any
help would be very much appreciated!!
1364 Milton Place
Rohnert Park, CA 94928
My name is Jeremy. I'm 14 yrs. old and have Arthrogryposis.
My mother was told that I would never walk nor be able to feed myself.
I did not crawl, I rolled to get to where I wanted to go. I have
had many surgeries (provided by Shriner's Hospital) and lots of
Arthrogryposis has effected my wrists, hands, arms,
and my legs. I cannot lift my arms above my head. I have to wear
long leg braces, without them I cannot walk. For long distance a
wheelchair is preferred. I tire easily.
I did learn to feed myself. I write pretty good
and dress myself for the most part. I have not figured out a way
to put on socks and shoes without the assistance of another person.
There are more every day issues that seem to arrive as I get older.
I would like to talk with others who have Arthrogryposis.
I would like a pen pal. Please add me to your pen pal list.
and Linda Rockenbach
1913 Bookbinder Drive
Las Vegas, NV 89108-7702
We have appreciated the efforts to put together
this newsletter. We enjoy reading and responding to others.
My wife, Linda, was born with Distal Arthrogryposis
Type I but was not informed of her diagnosis until our son, John
Lucas, was born and accurately diagnosed.
Linda's pregnancy seemed ideal. The only hint that anything was
wrong was the lack of fetal movements, "kicks" during
I have researched on the "web" that an
ultrasound could have detected some physical inconsistencies between
the 14th and 18th weeks. We would like to have another child. We
have tried and failed the invetro-fertilization procedure 18 months
ago. We would appreciate any additional information from other AMC
families who have had subsequent children to find out what prenatal
diagnostic testing and early interventions for treatment before
birth. Also any physicians who have treated similar cases are welcome.
56 Thorncliffe Park Dr.
This is a bit long, but it details my entire life.
I believe some of this information could be helpful in some form
or other to people who may have questions about what the prognosis
of A.M.C. could be (especially for children). If anyone wants to
contact me, do not hesitate. If you have any questions, ask away.
No questions are off-limits if it could help someone else. I also
give permission to anyone who wants use any of this information
with doctors, therapists, family, etc. ...This is what happened
to ME alone and DOES NOT mean the same things will happen with you
or your children.
My name is Angie Farquhar and I am from Toronto,
Canada. I just turned 30 on May 31 and I have A.M.C. I also have
a twin sister who is perfectly able-bodied (She is my biggest source
of support. I also have two older sisters and they too are wonderful.
I am quite lucky to have the family I do.)...
When I was born, all of my limbs were affected.
I was like a solid block when I was born. The only thing that I
was able to move were my head and my mouth to let out a mighty howl
at the sudden removal from my warm cocoon. My twin was born 8 minutes
later. My left side was affected the most. I also had bilateral
hip displasia. My femurs settled on the outside of my pelvis. As
with most people with A.M.C., I also had clubbed feet.
From the time I was born to 8 weeks, I was in hospital.
I had surgery to correct the clubbed feet, I had splints on both
hands, and I also had a pink body cast for two years to correct
scoliosis (curvature of the spine). The doctors at The Hospital
For Sick Children in Toronto (a world-class facility) told my mom
that the chances for my moving anything were quite slim. She was
told I would at least be in a wheelchair my entire life. Hardly
anything was known about A.M.C at the time so that was the only
diagnosis they could give.
I was sent to what is now known as the Hugh MacMillan
Children's Rehab Hospital (it used to be called the Ontario Crippled
Children's Centre. Boy have things changed in the past 30 years!)
There, I was introduced to a Dr. Mercer Rang who had a radical idea.
He thought I had nothing to lose by giving me intensive physiotherapy
every day for 3-4 hours. After a couple of months, my mom was in
for the surprise of her life when she came to visit one day. I moved
the third finger of my left hand! I had been moving my right hand
for a little while and the doctor wasn't too sure if I would ever
use my left hand at all. The nurse had seen me move that finger
the day before, but she wanted my mom to be surprised, and surprised,
she was. After that, everyone was sunnier with my prognosis.
I feel that the most pivotal part of my care was
the physiotherapy. This allowed me to recover more quickly after
the surgery, move my joints more freely, and build up my tolerance
when it came time to walk. My physio taught my mom how to do the
exercises at home and I was allowed to go home for short visits.
At the age of three and a half, I started walking out of the pool
where I went every day for hydrotherapy. I used to be afraid to
put my feet on the floor because I had casts and splints on them
for so long. Every time anyone would try to stand me up onto my
feet, I would pull my feet up and not put them back down.
According to my mom, I was a little flirt back
then and it was a little boy on the other side of the ramp-wall
that captured my attention. As soon as I saw HIM, I quickly dropped
my feet to the ground to splash water with him. As soon as I saw
that it didn't hurt me to put my feet on the ground, I just started
walking that day. I would still scoot around backwards on my bottom
at home because I would go faster, but I essentially never looked
back as soon as I was more mobile. I never used any walking aids
or splints after the age of 4.
When it came time to go to school, my dad fought
for me to attend the same public school as Caroline, my twin. It
took quite a battle, but the principal of the school was phenomenal
in convincing the school board that I had the same potential as
any other student. In fact, he went far above and beyond what any
principal should do. He set up a little red wagon program so I could
get to school on time. He would get other students to come to my
house with the red wagon to pull me to school. I always appreciated
the fact that it was not up to Caroline to pull me to school, she
could have her own life and friends.
Mr. Stevenson (principal) also got two typewriters
for me to use because my right hand was not quite strong enough
to hold a pencil properly. One typewriter was for school, and one
for home. He took one to two hours out of his busy day to teach
me to type and to make sure all other difficulties I may have had
were taken care of right away. Boy, was I lucky to have him in my
court to help me whenever I needed him. I could start holding a
pencil in third grade and never looked back at the typewriter until
I had to write essays in high school. It's funny that everything
is computerized now and I am using a keyboard again.
I became more active through the years. My sisters
were more important than any physiotherapist so I never saw one
after age 4. Caroline and I got into mischief on a regular basis
and I could do anything from climb trees to climbing up and down
the local bluffs (cliffs). I ran slower than Caroline, but I went
everywhere with her just the same. I never got my co-ordination
down enough to ride a bike, so Caroline would double with me when
my folks weren't watching, quite dangerous, now that I look back...
In high school I became as active as I could. I
joined the field hockey team, the volleyball team, the swim team
and the track team, throwing a javelin (I acquired an incredibly
strong right arm because that was all I used). I also became quite
active in dramatic arts, and joined all the plays I could. I joined
the choir too.
At the age of 15, I woke up on morning and I literally
could not walk. It took several hours to limber up enough to walk
again. I went to Dr. Rang, and he said I had arthritis in my hips
and there was nothing I could do except to keep as active as I had
always been. Oh yippee. To this day, I do stretching exercises for
about an hour every morning, sometimes longer, it depends on what
kind of a day I am having.
When I was in college, I turned to downhill skiing.
That was the most freeing experience in the world to me. I was gliding
for the first time in my life and no longer lurching as I walked.
I could also gain some wicked speed and I realized I was a true
speed-demon. I always skied safely with a buddy. I never ski alone.
Incidentally, I met my fiancée on the ski hills in 1988 in
another province. Both Steve and I believe it was destiny that brought
us together. We only lived about a half an hour away from each other,
but we met on a ski trip 600 miles away, WOW!!!
I graduated college at 19 after majoring in counselling
people with developmental disabilities. I loved working in this
field, but it was very physically demanding as I worked in a 3-story
group home with no elevating devices. I had to stop by 1990 at age
21, because my hips were hurting very badly.
It took from the time I was 18 to the time I was
20 to get an orthopaedic surgeon I was happy with and I could trust.
His name is Hugh Urquhart Cameron and he is a wee Scottish doctor
at the Orthopaedic and Arthritic Hospital in downtown Toronto...
Dr. Cameron was God in my eyes. His first words
to me when he saw my x-rays were, (pardon my language) "Holy
...., love, you're a mess" As soon as I heard this, I laughed
and I felt sure he was a doctor I could trust. Not for the swearing,
but for the honesty. He also had a sense of humor and to me, that
is essential in coping with the big issues. The next words out of
Dr. Cameron's mouth were, "What do you think we should do?"
This was new for me. A doctor who encouraged my opinions was so
refreshing. He said I was the expert for my disability and that
whatever I said was probably exactly what I needed. This was a huge
thing for me to be able to take my health into my own hands. Looking
at the x-rays, we could see that the hip areas were quite arthritic.
Having never had any hip sockets in the first place, he was surprised
I even walked at all, let alone without any aids. In the spring
of 1990, we agreed that I needed hip replacements (or rather, put
them in) and I was put on a waiting list for September of 1993.
...At the beginning of 1991, I was in so much pain
I had to start walking with a cane. I went to see Dr. Cameron, and
what he had to say after seeing my x-rays knocked me for a loop.
He said that my hips had deteriorated 2 years in the span of 3 months
and that I needed to have surgery immediately or run the risk of
causing irreparable damage and possible paralysis....
The way the next series of events went, I am still
having a hard time believing, and I lived through it. In short,
over the past 7 years, I had 12 operations on my legs (I look like
a road map, but at least I can walk). I had to stop working altogether,
Steve lost his job in the fall of 1991 due to downsizing, and never
got another full-time job until LAST WEEK. So you see, I now see
the way the events unfolded over the past 7 years as fate to keep
Steve and I together and pretty sane. We are both extremely lucky
we have the families we do who are willing to put up with us for
So, now to explain the operations. What a time!
In April of 1991, I had my right hip done. The interesting thing,
was that as soon as I woke up after the surgery, I needed no pain
medication. The doctor took away the pain by putting a hip prosthesis
in. I was 2 months non-weight-bearing after the surgery, living
at Steve's house because his mom used to be a nurse, and then I
started walking right away. I went with Steve and his family to
Scotland that September for three weeks and I had a great time.
My hip felt great and I could walk for miles without getting exhausted
from the pain.
The left hip was scheduled to be done in November
of 1991. This one, however, was not as easily done as the right
one. A problem we had not foreseen, was that before any surgery,
my left leg was always around two and a half inches shorter than
my right leg. After the surgery, that length discrepancy turned
into five and a half inches. What to do, what to do. We decided
to make up as much of the discrepancy as we could using a bone graft
taken out of my right hip during the right hip replacement. What
we had not bargained for, was that lengthening the leg also included
stretching out the muscles, nerves and ligaments. When I woke up,
I was expecting to breeze through the recovery again. Boy was I
in for a rude awakening! The nerve pain was quite like nothing I
had ever felt before... After the surgery, I was sent on to a rehab
hospital to recover.
About the third week into my recovery, I was up
on my crutches going from my bed to the bathroom when I misplaced
my left crutch and lost my balance. My automatic reaction was to
regain my balance by stepping onto my left leg. For you to understand
what happened next, I will explain the simple mechanics of the hip
replacement (this part is quite graphic, but I can think of no other
way to explain it). With the hip replacement, the doctor took off
the top of my femur (thighbone), and hammered a metal spike of sorts
down into the remaining part of the femur. The top of the prosthesis
(spike) went up into a plastic disc he placed into the pelvis. Then
he took the remainder of the bone he had cut off, ground it up into
a paste and put it in around the prosthesis in the femur. As the
bone healed, the paste would heal into new bone, strengthen and
make the whole area much stronger. The length of time it takes for
this to heal, is around 2 months.
So, as you may have guessed, the fall happened
well before the 2-month mark. As I stepped into that leg, the prosthesis,
halfway down, snapped the femur like a twig... This incident happened
on a Friday (December 13th, and I am NOT superstitious), and the
O&A is a specialized hospital. It does not perform surgery on
weekends or holidays. Dr. Cameron, who was the only doctor who understood
my case, was in Germany at the time. I thought, "What fresh
hell is this?" But there must have been angels all around me,
because the O&A accepted me back even though they didn't have
an emergency dept. They gave me x-rays and found what was really
broken. The most astounding thing for everyone (myself included)
was the fact that the hip and pelvis area had healed 100%!! It was
just the femur that had snapped.
After the x-rays, another excellent orthopaedic
surgeon, Dr. Peter Welsh and Dr. Smula, Dr. Cameron's right hand
man, saw me....The surgery went pretty well, by all counts. The
original prosthesis was removed and another, longer one was put
in its place. As soon as it was in. a metal plate went all around
the entire bone and prosthesis. Then a metal wire was wrapped around
that. And if there was any question of stability, 6 metal screws
were put in as well. I was wired for life! ...
I was doing well with my recovery until around
February. This is when I started to feel excruciating pain throughout
my leg....I tried to explain the pain to the attending doctor at
the rehab hospital. He was inclined to believe it was all in my
head. I was really angry that he didn't believe or understand what
I was going through. Thank God there was a nurse who did listen
to me. She often stayed with me 3-4 hours after her shift finished
just to talk me through the worst of it and to keep me occupied.
She also would rub the leg to "overstimulate" the nerves.
By rubbing the leg hard, it would trick the nerves into thinking
they were stimulated enough and they would settle down a bit. ...During
that time, I had extensive tests done on the nerves... we found
out that the femoral nerve was damaged permanently. I had had it
stretched out in the first surgery and it would have healed slowly,
had I not injured it further. When I fell, however, the femur scraped
across it as it broke....Today I only feel it on "bad"
days (when the barometric pressure rises, when I walk too much,
when I move my leg certain ways, etc.).
...After that foul-up, all went well, and I was
supposed to be released on the Tuesday after Easter. I was allowed
to go to Steve's place for the Easter weekend and I was excited
about getting a trial run before I went home for good. On the Saturday,
Steve and I decided to go to the mall for a while, just for a change
of scenery. I was walking with a cane, in a carpeted store, when
fate struck once more.
I was walking slowly, but I was happy to get around
by myself, when a little girl ran around the corner of the aisle
and went right into me. She didn't even see me and the fact I was
hobbling around with a cane and she knocked me right down... What
happened, was, my left foot was planted where it was (maybe it was
cemented in place and I just didn't notice) and it wasn't moving
forward. Even though my brain was screaming MOVE IT!!, the leg was
not budging. As I was going down, my kneecap snapped...I was sent
to another local hospital where the fractured patella (kneecap)
was confirmed. Upon learning this, I requested to be sent back to
my now home away from home, The O&A....
When Dr. Cameron saw me, he looked at me and then
gave me a great big hug. Few are the doctors who treat more than
just the physical. I needed that hug more than anything at that
moment. Then we got onto what we needed to do. That being, how to
proceed from here? At that point, I was almost SIX months non-weightbearing
on that leg. I had just started walking the week before and my left
foot hurt very badly. That meant that my foot was not used to being
flat out on the ground. What we had not foreseen, was that the foot
would start to club up again without regular use. We had decided
the week before, that I would try to walk around for a bit and see
if I could work it out myself. Fracturing my kneecap made that decision
a LOT easier. Maybe it was fate stepping in saying, "hey twit,
don't even ATTEMPT walking it out". Dr. Cameron and I decided
at that time, that it would be prudent to do the "two for the
price of one" thing and fix the knee as well as the foot.
In hindsight, (isn't hindsight always 20/20? Funny,
that...) this was not the most brilliant of ideas. Sure, it was
all done at once, but we did not factor in the fact that I needed
to keep the knee perfectly straight for 4 weeks. The cast on my
foot (for 8 weeks) was at least 6-7 pounds of plaster and it made
keeping the knee straight VERY difficult. Sure, I had a splint on
my knee to keep it straight, but it was hard nonetheless.
NEVER let anyone, under ANY circumstances; tell
you that foot surgery is painless.... I quickly learned that ALL
of my nerve endings are in my feet. The first thing I did when I
woke up was to start screaming, and I didn't stop for about a week.
I only know this from second-hand accounts and some very hazy memories.
The cast put on my foot upon leaving the operating room was too
tight, or rather it was loose when I left, I just swelled up 4 times
the normal size when I got out.
...I asked Dr. Cameron what the heck he did to
me and to please shed some light onto why I was a raving lunatic
for a while. Essentially, he told me he broke every bone in my foot
and reset them. He said he had to make 7 incisions all over my foot,
put in a metal plate, 6 screws and (this one is gross, even for
ME) put a metal wire from the tip of my big toe right down into
my foot to fuse it straight. The wire was actually poking out of
the toe so it could be removed at a later time.
...When all was said and done, I had spent 8 months
in hospitals. NEVER AGAIN. Many people say to me "Boy, how
did you DO it? I could never have done that". But you know
what? I wouldn't have either. Not if I had a choice. I just kept
dealing with things as they came along. I mean, it wasn't planned
that I would break my femur, or break my knee, or have drop-foot
to deal with. I am just grateful I can walk and that I didn't lose
my marbles in the process.
In an odd way, the whole thing allowed me to re-evaluate
my life and what was important to me. I got rid of a lot of excess
baggage I thought was so essential to my existence. Well, no more.
I have learned to communicate with the people around me better and
I take every opportunity to let them know how I feel about them
right away. An incident happened to change my life in this manner.
This next part I debated on whether I should mention to you or not,
it is pretty disturbing. But I will in order for you to understand
me a bit better. After the foot surgery, I almost died. In fact,
at one point I was clinically dead. I had a severe allergy to morphine
and we didn't know because I had never taken it before in my life.
The nurse had just given it me an injection and was about to walk
out when she decided to fix my sheets. She noticed that I went from
screaming to total silence and became alarmed. She tried to listen
for breathing when she realized I wasn't breathing anymore. I was
revived and then put on a watch for 24 hours with no pain medication
whatsoever. I made it through and came out stronger for the experience.
I decided to tell you this story for two reasons.
1) Because of this event, I lost all of my anger at the world and
the circumstances I was in and decided to accept and make the most
out of my life. 2) I was able to clearly see what my destiny in
life was (to teach others) and what steps I should take to fulfill
this destiny. I am NOT a religious person by any means and I don't
go to church, but I firmly believe in God. I have my own unique
relationship with him and I don't need church to worship him. I
had always wondered why I was able to take giant leaps of faith
even if I didn't know what to expect on the other side. After this
incident, I realized I had a total faith in God and that he had
a mission for me. He also placed a mess of angels all around me
to help me throughout my life. The angels are manifested in my family,
my friends, Dr. Cameron and all other doctors who helped me along
the way (I always thought Mr. Stevenson was an angel). I am also
fortunate to live in Toronto. The health care here is top-notch.
The health care system in Canada is excellent and I often cringe
to think of what might have happened to me had I been born somewhere
That whole chapter of my life finally closed in
June of 1993. When I left the hospitals behind, I got on with my
life and learned how to drive. I now wonder how I could have ever
gotten along without a car. Over the next year, I slowly increased
my physical energy levels and my output.
In November of 1994 I took a 1-year contract position
in a place called Discoveries Child and Family Centre. This was
a children's mental health centre working with families who had
children who were, or were at risk of, developing difficulties coping
in regular social settings. In this agency, I threw myself into
my work, knowing I was only there for a year. I was involved in
22 programs and I worked with the children in every setting you
could imagine, daycare, school, home, hospital, and even in battered
women's shelters. The shelters were the most difficult, because
I saw the aftermath of what domestic abuse does. I worked in all
those settings in the afternoons. In the mornings, I was a co-supervisor
of the Discoveries nursery program working with nine 2&3 year
Even though working at Discoveries was the most
difficult job of my life, it was also the most rewarding in so many
ways. Just seeing the smile on a child's face was sometimes enough
to get me to sleep after a brutal day. I got so much more out of
the job than I ever thought I would. I pushed myself and found out
I had new limits. I also found that I had a natural ability with
children to make them feel safe, comfortable, and happier with themselves.
Children often came to me instead of their teachers because they
found me less threatening. I think this is because I have A.M.C.
I am not perfect and they see that. I also have an understanding
of what being different is all about. I was always honest with the
children and the most important thing to me was letting them know
that it was O.K. to feel the way they did at the time. Acknowledge
it, and then help them discover what they could do about the situation.
I had the opportunity to work with some amazing people in the agency
and I LEARNED.
One particular co-worker had a profound effect
on my life. Do you remember the angels I tried to explain earlier?
This co-worker was, without a doubt, one of them. Her name was Nancy
and she helped me see more of what I was capable of than anyone
else in my lifetime was. She was a consultant working with children
in daycares and kindergartens. We worked out of the same office
and our desks were pretty close to each other. Nancy and I never
really got to work together, only a couple of times, but we chatted
almost every day either before or after work. She was such an observant
person and she watched me closely. How else could she constantly
surprise me by saying things that I only thought about? She was
the driving force in pushing me to see what I was really capable
of. She had an infinite confidence in my abilities even if I didn't
quite know what my abilities were at the time. Nancy was constantly
dragging me out of my comfort zone and making me look at my life
more and how I could change it to what I said I really wanted.
Another thing she did for Discoveries, was to teach
at the local college a course for students taking Early Childhood
Education. The course was called Developmental Diversities. Essentially,
it was a course on how to work with children with special needs.
One afternoon, just as I was about to go home, Nancy said she wanted
me to come in to talk to her class about my life and the ups and
downs of living with a disability. I thought about it for that night
and then decided that I wanted to do it. The day finally came and
I presented my life. It was one of the most exhilarating experiences
in the world! I got up there and spoke for around 45 minutes and
I didn't a) faint dead away b) choke on my words, or, c) lose my
audience. The best part for me, though, was the reaction I got from
these college students. They asked really good questions and were
very keen on learning. I have so much hope for our future teachers.
What I didn't know, was this was all a part of Nancy's elaborate
scheme. She had said several times that I should write a book or
become a public speaker. I would use my own life stories to help
others cope with life. I didn't realize I could have that effect
on people I didn't know.
I took Nancy's advice, and decided to GO FOR IT.
What really shocked me, was that all of the people I knew were not
surprised at this choice. In fact they were all extremely supportive.
They have been trying to tell me the same thing for YEARS.
I had to have more surgery before I could start
this new life. My right knee was starting to bother me terribly
and I couldn't figure it out. Dr. Cameron took x-rays and we saw
that the ligaments were so loose, the leg was going in two different
directions above and below the knee. Above the knee, my leg was
turning in. Below my knee, the leg was turning out. I was looking
quite knock-kneed. Usually the doctor would not touch this because
this is how the leg is most comfortable. My problem, was that it
was starting to hurt, as it kept slipping in and out of the socket.
In March of 1996, 3 months after I left Discoveries, I went into
the O&A for a femoral osteotomy. The doctor simply cut the bone
in half just above the knee, moved it to where it should be and
put a metal bar in to keep the two halves where they should be.
I was in the hospital and rehab hospital for 4 months with that
one just because I was non-weight-bearing and it was slow to heal.
In September, I had the tibial (shin) osteotomy. I was only in the
hospital and rehab for a month for that one.
When I got out of the hospital, I was given another
unique job before I could even think about what I was going to do
with my life. This job was one I both loved and hated, mostly hated.
I had to interview people with disabilities to re-evaluate their
status for the accessible transit system. There were cutbacks to
the special services and 24,000 disabled people had to be cut back
to 13,000 following new guidelines. I worked with two other people
on an interview panel. I certainly learned an awful lot about communicating
with all kinds of people and how to negotiate effectively The biggest
lesson I learned is how frustrating the government can be when trying
to explain things to them.
They simply don't listen and they are constantly
repeating the same old lines about "my hands are tied"
or "that's not my department" or "we just don't have
the money". I knew for a fact that they did have the money,
they just put it into another service. I believe it was a way for
the transit system to try to get more money from the government.
"Leave the disabled people out, and public opinion will force
the government to give more money" "The disabled people
are used to fighting for what they need, they can fight for this
too". I would often have a difficult time sleeping at night.
I didn't agree with the criteria I was to follow because it removed
many people from the system who I thought would have had great difficulty
getting around on the conventional system.
When my contract expired in June of 1997, I did
not renew it. I felt my own ethics (and my health, for that matter)
were being compromised. If my supervisors were not going to listen
to me, I could not keep following guidelines I did not believe in.
In fact I saw them as having been designed to kick as many people
off the system as possible. All of what I just said is my own opinion
When I left this job, I slept for about two weeks
and then I got involved in organizing an event to raise awareness
for the water quality of the Toronto harbour. It was a volunteer
position, but I needed a bit of a break and I needed to work outdoors
for a while.
That brings us to August of 1997. I had pretty
much decided that I did not want to work for anyone else anymore,
So I decided to start up my own business.
On March 30, 1998, PENGUINS CAN FLY (And we speak
too!) got off the ground. I have classified myself as a speaker/storyteller
and consultant. I will give talks to anyone or any agency who wants
me to to speak Specializing in: -Disability Issues - Using Humor
to Cope - How to Maintain a Positive Attitude (even when you think
the world is caving in on you) - Using Your Potential To Go For
It - and Customized Presentations.
I am also writing a book about my adventures. Some
are good and some are bad, but they are all adventures all the time.
The tentative title is: NEVER A DULL MOMENT.
Well, I think I should sign off now... I hope people
can learn from my case and maybe get hope for their children's lives
and futures. If I can help one person.....
7211 Marble Creek
San Antonio, TX 78238
My daughter, Genita, has Arthrogryposis in both
her arms and legs. She also has been diagnosed with Petite Mal seizures.
She is going to be 10 years of age soon on September 3. She now
has a one and half year old brother, who constantly, jumps on her
fragile body. He treats her just as if there is nothing wrong with
her body. She is getting tall and just recently started complaining
that she is too tired to walk. She wears KAFO's and refuses at night
to wear her hand splints. The family has adapted to her inabilities
but refuses to let her get away with out doing nothing.
The main problem is determining if her seizure
medication or keeping up with the other children is making her tired.
I'm concern about her keeping her grades up due to sleepiness and/or
being just plain old tiredness. Should I allow her to start using
her stroller, since she currently does not own a wheelchair? Other
people have been known to use a wheelchair then later not be able
to walk again.
She's a picky eater and is pretty slender; therefore,
she gets around okay. I hope she does not gain too much weight in
the future. She loves to wear sandals in the summer and sometimes
complains of her feet bothering her. We gone through horseback riding,
handcrank cycling to water-skiing. We have been creative in bathing,
dressing, grooming but now that she is going to need bras, we can't
figure this one out. She likes sleepovers with her cousin or the
neighbors. If any mothers can give me any helpful hints in these
areas, I would appreciate it. Thank you.
2318 Rodgers Dr. NE
Huntsville, AL 35811
Casey Linn is my 6-yr.-old son who has a severe
case of AMC, type amyoplasia. Doctors say he will never walk; however
I haven't given up the thought that he might; however we are going
nowhere fast. My insurance only pays 80% of just about everything
I have done or need for him and I needed to get some of the bills
down before we went any further. Right now he does not even make
regular visits to a PT/OT. He is only getting what we get at home
and that is not enough. He spends all of his time sitting and is
beginning to get curvature in his back and sometimes complains of
Casey is extremely intelligent and is very popular
at his school (as most of these kids are). He recently got to meet
professional golfer Casey Martin (same name, heh!) and had an article
written about the two of them in the Huntsville Times. He has a
2-1/2 yr. old sister named Shelby. Boy, was I nervous when I was
pregnant with her. I had a wonderful doctor who took care of me
and did all the right things (additional test, high-resolution ultrasounds,
etc.) when I was pregnant, but I was still nervous. Shelby is perfect;
however there is no one that will ever replace Casey.
I have been unable to get approved for any financial
assistance to get the things Casey needs like transfer equipment
and ramps for the house, proper modifications for our van, feeding
devices, clothing to accommodate going to the restroom (his legs
are bent at the knee-frog-like). Well, it is just darn hard. So,
the bills keep piling up or we do without. Casey is getting bigger
now and some of those things can not be put off anymore. Any suggestions
on who to contact for help? I have sent a picture of Casey and his
sister. Thanks for listening and I look forward to hearing from
you and others.
I need to call on you all for some advice. Our
daughter who turned two on 01-98 is starting to show a real interest
in potty training. The challenge is to pull up and down the pants
by herself. Any suggestions or sharing of experiences would be appreciated.
Our son Cameron is 17 months old and has arthrogryposis
of the upper extremities. He has no active elbow flexion at all.
I have heard of a dynamic elbow flexion splint to help with self
feeding. I am wondering if anyone has used this with any success.
The doctors feel he is not a candidate for a tendon transfer and
that an elbow fusion is the best solution. I feel uneasy about a
permanent surgery unless I am sure there is nothing else that will
work. Any information would be appreciated.
11095 CR 6850,
Moody, MO 65777
I have an 8 year old son, Dustin, who has arthrogryposis.
He receives speech, occupational, and physical therapy twice weekly.
Recently, the school's speech therapist insisted his speech delays
were not related to arthrogryposis and must be due to autism. I
do not believe that Dustin is autistic, nor does his neurologist
or any other doctors or professionals we have dealt with for the
last 8 years. I do remember reading an article in your newsletter
several years ago about a study that found approximately 1/3 of
the children with arthrogryposis experience speech delays. Has any
further research been done to determine why some children with AMS
experience speech delays? Could you write me with some statistics
or supporting documents stating that speech delays are sometimes
associated with arthrogryposis? I would certainly appreciate any
assistance you could give me. The school is giving me a difficult
time over this issue so it is necessary that I educate myself as
much as possible before the next IEP meeting in August.
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Sources for Adaptive Clothing for Children
- Adrian's Closet 1800-831-2577 Kids sizes
4 - 20. Young adult sizes to XXL. Pants up to 44" waist.
Winter wheelchair ponchos and adaptive mittens for kids ages
4 and up.
- David's Collection: 9800 Wilbert Avenue,
Baltimore, MD 21234. 410-668-0068
- Me Too! Clothing Ltd. 720 Moose Road, V2N
5N8, Prince George, BC Canada 250-964-0931 Children's sizes
3-18 and adults clothing too.
- Special Clothes: PO Box 4220 Alexandria,
VA 22303 703-683-7343
- Stitches From the Heart: PO Box 472515, Charlotte,
NC 28247 704-552-1483
- JC Penney 800-709-5777 Penney's catalog "For
Your Special Needs" includes line of easy dressing fashions.
- Kidability 1800-333-8087
- C. Bell Co. 1800-201-8300
- "The 25 Best Catalog Resources for Making Life
Easier" by Shelley Peterman Schwarz. A good resource
for dressing aids-equipment or devices to help you dress children
or help them dress themselves. Call 608-274-4380 or visit her
website at www.Making Life Easier.com
From the Disability Bookstore:
The Disability Resource on-line Book Store is now 10% off everything,
all the time! Come check out our hundreds of selections on all disability
topics with an easy to use search engine. See the front and back
cover on-line! Order on-line or call us at (800) 686-6049 or (505)
332-0630, we can also mail you our catalog.
Books and videos about:
- Assistive Technology
- Children's Books
- Education and Employment
- Learning Disabilities
- Mental and Physical Disabilities
- Sports and Recreation
- and much more...
Visit the TDR Library at http://www.disabilityresource.com
or give us a call at (800) 686-6049. Or simply e-mail your request
with your name and address to email@example.com.
We can also help you get hard to find titles, just call us.
Toys for Children with Special Needs
The National Lekotek Center provides a toy lending library and play
centers throughout the country for children with special needs.
Call 1-800-366-play (tty 847-328-0001) for more information on services
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