vol. XVII, no.2, July, 1996
Eric and Diane Voigt have started an Arthrogryposis
“list server” on the Internet. To subscribe to the list,
send an e-mail message to MAISER@hoffman.mgen.pitt.edu.
Leave the subject blank. In the body of the message, type SUBSCRIBE
AVENUES. Once you have subscribed to the list, you can post a message
by sending it to Avenues@hoffman.mgen.pitt.edu.
The message will be relayed to everyone on the list. The current
subscriber list includes over 100 members. If you have any questions
about the list itself, contact Diane@hoffman.mgen.pitt.edu.
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Parents with Disabilities
North Carolina State University School of Design
is looking for parents with disabilities to take part in a national
Needs Assessment Survey...
Custody battles, school inaccessibility, lack of
access to personal assistance services to help in caring for young
children, lack of knowledge of adaptive parenting equipment, housing
that is not adequate for parenting: People in the disability community
know that parents with disabilities face many challenges. It is
unlikely that the disability community will be able to influence
policy changes, however, until hard data demonstrate the significance
of these issues to families with adults with disabilities.
The opportunity to make a case for parents with
disabilities opened in November, 1993, when the National Institute
for Disability and Rehabilitation Research (NIDRR) of the U.S. Department
of Education awarded a four-year grant to Through the Looking Glass
(TLG) in cooperation with Berkeley Planning Associates (BPR) and
the World Institute on Disability (WID) to establish a Research
and Training Center on Families of Adults with Disabilities. The
Center for Accessible Housing in Raleigh, North Carolina, is working
with NCSU to address housing design issues for parents with disabilities.
As part of its role in the RTC, BPR is now conducting
the nation's first survey of parents with disabilities to gather
information about challenges, barriers and unique needs, and to
document the kinds of service system changes that public policy
needs to address. All participants will receive a free subscription
to Through the Looking Glass' newsletter Parenting with a Disability
and gain access to TLG's parents' hotline and network.
If you are a parent with a disability, open to
sharing your experiences, and willing to take a few minutes to complete
a mail survey, call or write to:
NCSU Center for Accessible Housing
Raleigh, NC 27695
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Support & Information”
A support group for arthrogryposis is now being
formed for the Mid-Atlantic region. The group will provide support
and information to both families and to individual adults, affected
with arthrogryposis. Monthly support meetings will be held. For
more information, please contact:
c/o Arthrogryposis Support & Information
1201 South Courthouse Road #419
Arlington, VA 22204-4640
Arthrogryposis Support & Information is operated
by Christopher Johnson who has arthrogryposis and walks with braces
and crutches. He is thirty-one years old, married, and has a two-year-old
daughter. Chris works for the Department of Navy in the Accounting
Office as a Financial Control Specialist. He earned a B.A. degree
from the University of Maryland in 1986 and an A.A. degree from
Prince George's Community College in 1985. He was born and raised
in Washington, D.C. and can drive without the use of any hand controls.
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AMC Picnic Planned
36 Honeysuckle Drive
Amelia, OH 45102
I have arthrogryposis and I am having a picnic
for people who are affected with arthrogryposis. It will be held
September 28, 1996, in Cincinnati at Moundview Park, located in
Newtown, Ohio. This picnic is a social gathering for parents and
other concerned and interested people. This is a chance for us to
talk and socialize about the ups and downs of this particular disease.
We will be providing a clown, activities and a fabulous grill-out.
This is free of charge, but if anyone would like to bring a food
item to help out ,please feel free to do so. The time is set at
noon to ????. If overnight guests would like to stay over in Cincinnati.
I have arranged discounted hotel rooms and also a discounted breakfast.
Please RSVP right away, so I can get an idea on
the amount of people coming for food, prizes and other accommodations.
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AVENUES is looking for volunteers to translate
newsletters into Spanish, French, Italian, and German. If you or
someone you know is bilingual and interested in helping AVENUES
network more people internationally, please contact us.
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Amyoplasia, the Most Common Type of Arthrogryposis:
The Potential for Good Outcome by Jill M. Sells, M.D.; Kenneth
M. Jaffe, MD; and Judith G. Hall, MD.
Background: Amyoplasia is the most commonly seen diagnostic subgroup
of children with arthrogryposis. The natural history of these children
has not been well described previously.
Methods: Review of the medical records of thirty-eight
children with amyoplasia enabled us to describe their birth characteristics,
therapeutic interventions, and functional outcomes.
Results: Eighty-four percent of the children had
symmetrical, four-limb involvement, which was similar to the original
descriptions of amyoplasia, at birth. There was an average of 5.7
orthopedic procedures per child, and the children had multiple casting
and splinting of their limbs and participated in physical and occupational
therapy on a regular basis. By the are of 5 years, 85% were ambulatory,
most were relatively or completely independent in their activities
of daily living, and most were in regular classrooms at the appropriate
Conclusion: Although children with amyoplasia
have pronounced musculoskeletal involvement at birth, which requires
orthopedic and rehabilitative interventions during their childhood,
their functional outcome in both physical and educational areas
[Editor’s Note: Dr. Judy Hall has defined
amyoplasia as one of the most common classes of arthrogryposis in
which (usually) all four limbs are involved, intelligence is normal,
and there does not appear to be a genetic cause. Hall estimates
that this type of arthrogryposis constitutes about one-third of
all cases of arthrogryposis.]
The study summarized above involved children diagnosed
with arthrogryposis of the amyoplasia type who were followed by
the Arthrogryposis Clinic at the Seattle Children's Hospital and
Medical Center. The purpose of the study was to determine how well
the children with this type of arthrogryposis were able to function,
given the surgeries, casting and physical and occupational therapy
that the children received.
Ninety-four percent of the children in this study
received in physical therapy and 79% received occupational therapy.
Therapy usually began very early, often in the newborn period. On
average, these children received therapy for five years. Splinting
and casting were used in almost all cases to maintain or improve
joint range of motion.
Seventy-six percent of the children had surgery
on their feet, 39% had knee surgery and 18% had hip surgery. Twenty-four
percent had elbow surgery, 16% had wrist surgery and 8% had hand
surgery. Five percent had spinal surgery.
As noted in the article abstract, the outcome
for this group of children was generally good. Of the twenty children
in the study who were over five years of age, only three (15%) were
not walking. Of the non-walkers, two had scoliosis and one had not
had any corrective surgery on flexion contractures at the knees.
Of the children of all ages who were walking (25), fourteen walked
with no aids; five walked with braces or aids; and six walked with
braces or aids but used a wheelchair for long distances.
Of the twenty children over five years of age,
75% were fully independent in feeding; 15% required intermittent
assistance and 10% required assistance throughout. In dressing,
10% were independent; 60% required intermittent assistance and 20%
needed assistance throughout. The percentages for toileting were
35% independent, 40% intermittent, and 5% throughout. Of the twenty-five
children in school, 64% were in a regular classroom, 16% in pre-school,
8% in special education for physical reasons and 4% in special education
for academic reasons.
Pediatrics, Vol. 97 No. 2 Feb.,1996
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From Families Around
and Richard Nordlund
11600 Follett Road
Corry, PA 16407
We are grandparents from Pennsylvania whose first
grandchild, Rhianna, born way out in California (4-19-95), has arthrogryposis.
She was born at 29 Palms and immediately taken to Balboa Navy Hospital
for treatment. We flew out to be with them then, and have since
had them flown to Pennsylvania to visit us when Rhianna was five
What an amazing, beautiful, healthy little girl
she is, except for the fact that she can’t move her arms very
much. Although she faces a long, hard struggle in life, it will
not be as hard as some because her arms, hands, legs, and feet are
nearly straight. With physical and occupational therapy five times
a week, she has gained some bend on her own in the knees, but little
self-movement in the elbows. Her hands, which were as flat as pancakes,
have developed some movement in the thumb and fingertips.
With the devoted care of her mother and father
we have no doubt she will achieve all she is capable of. Under the
benefits of medical care provided by the military, Rhianna is getting
the treatment she needs. But the Marines job security is not always
reliable and we are worried about insurance prospects should they
[Rhianna’s parents] leave the military. Although we would
like them to come east, we know California offers the needed state
support they may one day rely on.
Maybe some of your readers could offer us suggestions
on things absent grandparents can do or provide to make life a little
easier for our grandchildren and children.
and Caroline Chamblin
2964 North Shore Road
Bellingham, WA 98226
Thank you for all the work you have put into your
wonderful publication; it has helped us immensely in coping with
our own experience with arthrogryposis. We would like to relate
a bit about our situation, in the hope that it might help others
as we ourselves have been helped.
Our son, William Paine Chamblin, was born on April
21, 1995. His diagnosis of arthrogryposis was made at eight weeks
pre-term. Caroline had polyhydramnios (excess amniotic fluid), and
the OB wanted to determine the cause. The pregnancy had been totally
normal to this point; in fact, an ultrasound and amniocentesis at
15-1/2 weeks had disclosed nothing abnormal. Our local OB saw some
things that concerned him, and we were referred to Swedish Hospital
and Medical Center in Seattle for further tests.
Ultrasound revealed multiple physical defects,
including severe contractures of all four extremities, micrognathia
(a small lower jaw), and a sucking/swallowing problem. This last
was the likely cause of Caroline’s polyhydramnios. We were
led into a consult room, in shock, and told that there were several
syndromes likely to be present, and that the net result would be
that the baby would be very unlikely to survive birth or the immediate
postpartum period. Of course, with that devastating piece of news,
we returned home numb and shaken. Our plan from there was to induce
birth as soon as there was evidence of fetal lung maturity, since
the excess fluid was causing Caroline extreme discomfort. Several
amnios and several failed inductions later, we opted for a cesarean
section, which indeed occurred exactly on the baby’s due date.
We were still expecting to be handed a baby which would not survive
more than a few minutes.
Shortly after the (spectacular) rupture of the
bag of waters on the operating table, a baby boy weighing 8 pounds,
11-1/2 ounces, was brought crying into the world. Aside from a need
for a small amount of oxygen and a broken humerus (upper arm) sustained
during delivery, it all went very smoothly for the little fellow.
His wrists, elbows, and shoulders were all frozen in tight flexion
contractures, while his hands were locked in a “swan-neck”
mixed flexion/extension contracture. His left foot was severely
clubbed, with the knee and hip in tight flexion. His right foot
was also clubbed, but with the knee in hyperextension and hip in
flexion, resulting in his right foot being next to his left ear.
His jaw was indeed small, with his lower lip disappearing into his
mouth, and his tongue unable to offer more than a token effort at
sucking. He was strong, however, and very responsive to stimulation,
and determined to prove the doctors wrong about his chances for
William spent five weeks in the Special Care Nursery,
mainly due to his inability to swallow or manage his copious respiratory
secretions. We had a gastrostomy placed, which eliminated the need
for a nasogastric tube for feeding, and he was kept on a 30deg.
wedge at all times to help with the constant regurgitation he experienced.
From the very first, the team of physical, occupational, and speech
therapists were attending him constantly, crafting tiny splints
and leaving elaborate diagrams of his physical therapy regimen and
feeding schedule. As his range of motion increased, new devices
were made, the whole process photographed to provide his nurses
with models for applying the elaborate system of harnesses and splints.
On Memorial Day we brought William home, after having arranged for
night nurses to attend him and manage his airway needs, a constant
act of vigilance.
As we write to you now, he is 6-1/2 months old,
and a wonderful, bright, happy baby. He has shown us that he is
incredibly tolerant of the painful therapy that we must perform.
He is tolerant of the heart-wrenching gagging that we often induce
in doing deep airway suctioning, and tolerant of the burning of
the silver nitrate application to granulation tissue at his gastrostomy
site. After each of these procedures, he stops his crying immediately
and looks up at us in forgiveness. He is the most even-tempered,
tolerant, good-natured baby we have ever known (excuse our bias!).
William is currently fed on a 24-hour drip via
feeding pump (on pumped breast milk) through his gastrostomy, we
recently had his latex catheter replaced by a silicone MicKey button,
and are extremely happy over the improvement in comfort and ease
of dressing and handling him. After two videofluoroscopic feeding
studies the danger of aspiration is still shown to be high, and
we are planning to withhold oral feeding for several more months.
His suck and swallow have improved greatly, and he now works noisily
on his “binky,” smacking it greedily and with great
gusto. There still exists the possibility of his having a submucosal
(incomplete) cleft of his soft palate, but it is too early in any
event to consider a surgical repair if such proves to be the case.
Additionally, an orthodontist has explained to us the surgery options
in aligning his lower and upper jaws as he grows into his late teens;
this is light-years down the road for us! He still needs constant
attention to help him clear his airway of secretions and regurges,
though he has developed quite a nice cough and sneeze, and can manage
a great deal of it himself; we continue to have night nursing visits
to allow us to sleep.
From the beginning, there has been debate over
the exact form of arthrogryposis that William has. Initially diagnosed
as distal type II, then as amyoplasia, it is now postulated that
there is a muscular dystrophy component involved. Additionally,
William is hemiplegic, with only a small amount of movement on his
left side. This is atypical for arthrogryposis, and is being investigated.
We eagerly await the results of a brain MRI scan and muscle biopsy
performed at Children’s Hospital and Medical Center in Seattle,
and hope to learn more about what may have caused his condition.
With much P.T. work at home, and with community therapists working
hard for William, he now has a good ability to bring things to his
mouth with his right hand, and has nearly full passive range of
motion of all his extremities. His facial muscles are a bit hypotonic,
so his smile is a bit wry at times, but it is clear to us that he
is a happy, healthy, growing baby boy, who loves to laugh and play,
enjoys new people, and always reaches out to mom and dad for a hug
We look forward to reading the experiences of
others in AVENUES, and would be happy to share our experiences with
anyone who may wish to contact us. We understand that you may have
to edit our long letter! Keep up the wonderful work; AVENUES has
touched many lives besides ours, and has allowed us to expand our
support network tremendously!
April Jenkins and Frederick Palm
Hcr 61 Box 12
Blairs Mills, PA 17213
We have a daughter named Rachel Naomi Jenkins.
She was born May 13, 1993. Rachel had lots of things wrong with
her and where she was born they didn’t know what was wrong
with her. So we had to take her to the Hershey Medical Center in
Pennsylvania. Rachel was seen by Dr. Mary Clark. She diagnosed Rachel
with AMC. Rachel’s legs were twisted and bent up to her hips.
She also had the umbilical cord wrapped around her right leg (and
made three marks) and almost made her leg fall off. She had two
club feet and her arms were contracted very tightly. Her hands were
tightly closed shut and her neck was very tight on the left side.
She could only move her head on the other side. She had casts on
her feet from one week old to about five months old. She started
getting therapy when she was about one month old (P.T. and O.T.).
Rachel got lots of colds and fevers. Rachel’s first surgery
was on her leg when she was one year old. They did plastic surgery
and club foot surgery. Then she had surgery on her other foot. She’s
now two years old.
Rachel is very smart. She does things with her
mouth. She can swing her arms. She can get little objects between
her fingers to play. She can play with regular toys and she plays
with therapy toys. She tells me what she wants, like: “Mommy,
please get me some juice.” She’ll say please and thank
you. She gets around by scooting on her bottom. She’ll be
getting a self-feeder to self-feed herself by using her chin so
the spoon will go to her mouth. She has a manual wheelchair for
now, but will have an electric wheelchair to get around and for
school. She’ll be getting a computer for school – maybe
a touch or a sound/voice one. She’s a very smart girl. She
only gets speech therapy every six months. Rachel also paints pictures
by using the paint brush in her mouth. Rachel is a very good listener.
She likes to play with other children. She’ll talk on the
phone to people. We also help her to brush her teeth. She likes
to get her teeth brushed. Rachel also is potty-trained. I’d
like to ask of anyone: are all arthrogryposis people heavy? Rachel
is thirty inches long and weighs thirty-two pounds, but she used
to weigh thirty-three pounds. We had to put her on a diet, but she
really likes to eat and she gets her exercises.
Also, I had a normal pregnancy but had to have
a C-section. Rachel was breech and it was a very hard delivery.
The doctors said she almost died due to the umbilical cord wrapped
around her leg. It was wrapped around her neck, also. Rachel was
a very dark, dark purple.
One Whispering Hills Drive
North Branford, CT 06471
I am writing to thank you for your wonderful newsletter.
It was great to read other people’s stories about arthrogryposis.
My son John was born 1/20/95 and was diagnosed as having arthrogryposis
in my fifth month of pregnancy, prior to this I had never heard
of this disorder.
John’s feet are severely clubbed, he was
casted from seven days to five months old (they were removed then
so he could start receiving physical therapy). John’s left
wrist was also affected, but splinting has corrected that. John
just underwent surgery for bilateral club feet one month ago. With
the surgery, they were planning on stretching the tendons, but John’s
were so badly scarred that they had to cut them. He is doing well.
He is a very active little boy, he can roll across the whole house
in a blink of an eye, and can pull his body with his arms. He has
not been able to crawl yet.
When John was eight months old, we found out that
both of his hips are dislocated. The doctors we’ve talked
to recommend not doing anything with his hips. I would be interested
in hearing from people whose hips are dislocated and what have or
haven’t been done to correct them, and what problems, if any,
have arisen from having hip surgery or not having surgery.
I look forward to future issues of AVENUES, it
has provided us with more information than the doctors have been
able to give.
585 Grace Way
Scotts Valley, CA 95066
During the February on-line chat, some of the
people asked about Feldenkrais. It’s one of the most helpful
treatments I’ve found. Here are some excerpts from their flyer
“In Awareness Through Movement (ATM) lessons,
the teacher verbally guides you through a sequence of movements…sitting
or lying on the floor, standing, or sitting in a chair…You
learn to relax. You learn to abandon habitual patterns and develop
new alternatives. The subtle ATM movements develop not only awareness
but also flexibility and coordination…FUNCTIONAL INTEGRATION.
[In] This one-to-one learning process…the learning is communicated
through slow, gentle touch. Comfortably clothed, you lie or sit
on a low padded table. The practitioner guides you through a series
of precise movements that relax tense areas. The movements alter
habitual patterns and provide new information directly to the
neuro- muscular system…”
I get 1- 1. After my first two “lessons,”
my balance improved enough to walk across a parking lot with a cane
(that was three years ago). When I had to stop weekly sessions (insurance
no longer paid), I got noticeably worse. Two times a month are essential.
Recently, Feldenkrais loosened my sometimes-painful blocked right
hip. Lessons include tapes to guide movements that can be done at
home. For a directory of certified practitioners contact:
The Feldenkrais Guild
P.O. Box 489
Albany, OR 97321- 0143
503-926- 0981; Fax: 503-926- 0572
Hope this is helpful to some of the people.
115 Huntington Road
Worthington, MA 10198
I don’t know if you can help me with this
question, but the urgency of it compels me to ask it. My grandson,
Oliver, is two and a half years old and has AMC in his arms and
hands. He started walking about two months ago, which was delayed
due to numerous operations and hospital stays during the first year
and a half of his life; the operations were needed because when
he was born his intestines were on the outside of his stomach. Fortunately,
this condition has been corrected, and he hasn’t been hospitalized
in over six months.
However, with the rapid progress he’s been
making in walking, the problem he has now is not being able to protect
himself when he falls, because his arms aren’t strong enough
to break the fall. The poor kid has taken some nasty falls, often
bumping his head or face. He’s being fitted for a helmet,
which should help, if they can get him to wear it. He’s a
very active, lively boy, and the falls don’t seem to phase
him much, but surely they must be. My thoughts are that in time
he’ll get surer on his feet, as well as learn to squat down
faster or roll to protect himself. But in the meantime, we all hate
to see him get injured so much. My question is, do you know of any
other devices someone may have devised to protect kids with similar
handicaps? Any help you could give us or suggestions of where we
might look for answers would be greatly appreciated. Thanks for
Smith and Bryan Payne
#21 - 1253 Johnson Street
Victoria, B.C. Canada
I’d like to take this opportunity to introduce
our family to AVENUES and other families whose children have AMC.
We have two children, Christina, three years and
Nicol, born in September, 1995. Christina was born with a congenital
heart defect– pulmonary stenosis which has been fully corrected.
She is a lively girl who seem to be developing normally. Nicol was
born with AMC congenital complex.
When Nicol was delivered her left leg was at 90deg.
angle straight to her face. It was after her delivery that a geneticist,
Dr. Pat McLeod, at Victoria General Hospital, diagnosed her. Her
arms were bent at the elbow and wrist. It seems that all the joints
in her body are involved including her shoulders and neck. She receives
P.T. regularly but will require other services (O.T.) as she grows.
I have read all your articles and find them very
informative. So far, Nicol has had successive casting on her legs,
has a hip brace, and hand/wrist splints. She has had a neck/head
brace ordered as her head control is weak and she turns to one side
All her equipment is very expensive. I wonder
how other parents cope with the expense. I’m also feeling
a lot of emotional pain but I don’t always show it on the
outside. On the outside, I look like a rock to others but inside
I hurt a lot. I think it would benefit me to communicate to other
families whose children have AMC. I often wonder why Nicol wasn’t
diagnosed by ultrasound since I had two during my pregnancy.
I still don’t know how common AMC is and
wonder how it was passed on to my daughter. My daughter’s
case of AMC seems very complex and in this early stage we are still
coming to terms with the extent of her disability. We are still
not sure whether she will have arm function. We wonder what her
life will be like if she doesn’t gain function of her arms.
Can any parents contact me with information regarding this challenge?
We do remain hopeful that she may in the future lift her arms. We
would be interested in communication with families in regards to
220 East Oak Street
Norristown, PA 19401
My daughter, Alondra Eeilder, born October 5,
1995, by C-section, has AMC. She is now four months old, eats very
well, is very alert and intelligent, and is a beautiful little girl.
The difference is that she does not move her arms at all. We have
some movement in her fingers. Her left side is progressing better
than her right side. The left arm has an elbow, but the right side
is completely straight. Her feet are club but not so bad. She moves
them very much and her hips are in front, thank God.
At present, I am being seen by Children’s
Hospital in Philadelphia and recently have been referred to A.I.
DuPont Institute in Delaware. I believe very much in Dr. Richard
Davidson at Children’s Hospital. Thanks to him, he has been
our guide for what to do and whom to see.
I am not very good at talking in letters, but
I am willing to do anything to help get Alondra on the road to better
health. Please put me on your list of interested parents of AMC
Looking forward to hearing from you in the future.
Anyone who wants to call or write to me is very welcome.
28 Jacobs Street
Evatt, A.C.T. 2617
Chris and I are the proud parents of Joshua James
Bell who is now fourteen years old (born 12/17/81). It’s taken
me a long time to write after receiving the AVENUES newsletter from
a wonderful physio who encouraged us with her very caring and loving
support. Joshua was born ten weeks prematurely and was diagnosed
as having AMC in hips, knees, and feet. His elbows are affected
to small degree and his hands are hypermobile – of all things.
During my pregnancy, I had early bleeding and a reduced amount of
fluid. At thirty weeks, I had a huge bleed which resulted in having
Due to a wonderful surgery by Dr. McNicol, here
in Canberra, Joshua’s talapese feet were corrected. Unsuccessful
surgery by this same dedicated doctor could not relocate dislocated
hips. Many months of plasters succeeded in achieving a bend of 90deg.
to his knees. After early years of rolling with plasters and “scooting”
on his bottom propelled by his left arm, he decided with much determination
to walk at the age of three.
He attended main stream primary school and now
goes to our local high school. This is his third year of high school
and he’s had his fair share of bullying and physical obstacles
(he still takes the stairs even though there are ramps available).
Thanks to his wonderful personality and crazy sense of humor, he
lives a happy and productive life, one step at a time.
I was propelled into writing to AVENUES to share
my story after a lady rang, looking for contact with another family
whose lives have been affected with AMC. We are now writing to each
other and sending photos of our children. Her daughter, Amy, is
four years old and her arthrogryposis affects her arms, legs, and
jaw. Thank you to all the people who write to AVENUES – it
shows we are not alone.
8238 11th Ct. SE
Olympia, WA 98503
I have read so many beautiful and inspiring letters
from such courageous people in AVENUES over the past two years.
You all have been of such encouragement to us. We have a two-year-old
daughter through adoption with arthrogryposis. I feel our story’s
a bit different since it was by choice that we became involved with
Our daughter was born in Korea with amyoplasia,
affecting only her upper limbs. Within ten days of life, her biological
parents gave her up because they were given little hope for her
future. We first met Soo (Excellent) Hee (Brilliant) through a picture
at age four months. She was born with shoulders internally rotated,
elbows fixed in extension, and flexion contracture of her wrists.
She received range of motion by a therapist visiting her three times
a week in the orphanage. The U.S. doctors believe this saved her
small muscles from atrophying. Josepha Soo Hee arrived home at ten
months of age and I continued the therapy at home. She started seeing
a private O.T. one hour weekly as well as being enrolled in our
schools early intervention program. We had prepared ourselves as
best we could, having attended an Arthrogryposis Seminar, with Dr.
Judith Hall as guest speaker prior to Josepha’s arrival.
Although her sense of balance was off a little,
she started walking within the normal time frame, fourteen months.
She had no protective reflexes but quickly learned to be fairly
cautious. Her legs are solid and muscular and eventually compensated
in balance. She can run, jump, and pedal all within the normal range
for her age. She is in the 70–90% for her height and 50% for
her weight in her age group. When she was one, she was fitted for
her first night splints.
At age two, she was evaluated at the arthrogryposis
clinic at Seattle’s Children’s Hospital. The doctors
agreed hers was a mild case, finding all muscles present in her
arms. They believe over time and use, they will grow stronger. They
do not see her as a candidate for transfer muscle surgery. Her wrists,
which were severe at birth, now have good flexion and function.
She is able to draw, self- feed, turn pages, and carry objects with
a fairly good grasp. She drinks from an open cup with two handles,
or a “shot glass” with one hand. She has four fingers
effected, but can now open both hands fully and clap. We are beginning
to learn to dress ourselves now at two and a half. The arthrogryposis
clinic in Seattle showed us a wooden invention that holds shirts
upside down. You lean over and drop your arms into the sleeves.
The O.T. there has photos of this invention if anyone is interested.
It is made simply of a few wooden pieces and adjusts to different
Josepha seems to also have a mild case of this
condition in her jaw. She drooled constantly for the first two years.
She chewed only with her front teeth until I made her use her back
teeth. Chewing gum was good therapy to help wake up those sleeping,
weak muscles. She hasn’t drooled in over six months.
Her cognitive skills were tested at twenty-four
months by doctors in the Genetic Department of our military hospital.
Josepha’s test scores were above the thirty-six month old
level. The doctor wrote a report stating she spoke in twelve-word
sentences with pronouns, knows her colors and shapes, her sex, and
could stack a tower of fifteen blocks.
Josepha is our fifth and youngest child. Her determination
and gentle nature bring such joy into our family. We each feel we
have grown knowing her, and sharing our life with her. We hope that
anyone considering a special needs child through adoption won’t
be too intimidated by the child with arthrogryposis. Our advice
is to consider the whole child, and not just the condition.
Our son, Ryan is twelve years old and in the seventh
grade. He uses a wheelchair and has had an attendant in school since
kindergarten (several different ones). He is on Student Council,
the Honor Role, plays a trumpet in the school band and jazz ensemble,
and runs the score board for the seventh grade girls and boys basketball
teams. He has taken the school by storm. His limitations are physical
but he has been able to accomplish much. Over the last five-plus
years, I have become involved in advocacy on a state wide basis.
My wife, Karen, and I are willing to talk to anyone by voice, mail
or e- mail. Ryan can also reply if anyone is interested.
205 Sheri Drive, Apt. B
Peculiar, MO 64078
My daughter is fourteen months old. Her name is
Cheyanne. My husband and I found out she had arthrogryposis when
she was born by C- Section on December 28, 1994. Cheyanne’s
doctors said she had a very mild case of arthrogryposis.
Cheyanne’s arms are flexed and her feet were
pointed down. At eight days old, she started P.T. and O.T. They
made a series of splints for her arms and feet. At eight months
old, she had casts put on her arms were they would stay bent. The
casts worked pretty good but were making her uncomfortable. At eight
months old, the doctors decided to go ahead and do the tendon lengthening
on her ankles, which will allow her to walk. At ten months, the
doctors decided to go ahead and release the tendon in her right
elbow. The release on her right elbow is doing really good. She
gets things in her mouth with hardly any problems at all.
Cheyanne is a very smart girl. She can do a lot
of things I didn’t think she would be able to do. She has
made me and my husband’s life great. I call her my angel,
because to me she is an angel.
If anyone would like to call or write please feel
free to do so. I like to inform people as much as I can, and like
to be informed, so please write and tell me about your child.
HQ 43RD SIG BN
CMR 420, Box 1392
APO AE 09063
I have a son, David, who is thirteen years old.
He has AMC. He is currently learning to walk. Before, he has been
in a wheelchair for twelve years. Do you know of any kids that learned
to walk at this age? I would like contact with them.
(written by Lisa’s mother, Jackie Angelo)
3646 Ross Road
Palo Alto, CA 94303-4447
Lisa is my very busy (on overload actually!),
thirty-one-year-old daughter who has arthrogryposis and I am doing
this to save her a little time. We both love AVENUES and wish we
had had something like it when she was growing up and there were
decisions to be made about how to treat her—both medically
and as a person.
Lisa is the mother of two adorable, active little
boys, aged two and five, runs a pre- school of which she is the
sole owner, and is married to a man voted “best looking”
in his high school class! For women interested in how arthrogryposis
and pregnancy co-exist, Lisa is a success story. She did have trouble
with balance and fell a couple of times in the first pregnancy,
but fortunately without any ill effects. She delivered full-term
babies without C-Section—the last one weighed over eight pounds
and she normally weighs about 105.
She has a degree in Psychology and a California
Teaching Credential earned from the University of Santa Barbara.
We have always been very proud of our beautiful daughter who worked
hard without complaining to compensate for her disability and is
one of the most successful adults I know.
Box 78A, Indian Lake
East Machias, ME 04630
As always, we enjoy the AVENUES newsletter. Through
your efforts, we contacted the Beller’s from Yardley, Pennsylvania.
Their daughter, Lauren, is a year younger than our daughter, Ansley.
They come to Maine on vacation in September and we visited with
them for a week. We enjoyed getting to know each other and had a
When I got the latest AVENUES, I called Kathleen
Teran in Conneticut. Her son sounds similar to Ansley as a baby
(being mildly affected). She appreciated my call, as others who
have called her have children who are more involved. I had nothing
but positive things to say about my daughter’s progress. I
told her [Kathleen] the first year is the hardest and she’s
past that now.
Ansley is scheduled for a procedure in May to
stop the growth in her longer leg. They will put staple in the growth
plate of the longer leg as she is reaching full puberty now. I contacted
Dr. Hall in British Columbia and she advised this was a good time
to equalize Ansley’s legs. Our doctor is Michael Goldberg
Do you have any information on others who have
had this done or are treated by Dr. Goldberg?
We get on AOL for the chat. Ansley does all the
typing during the hour-long chat.
2845 Polo Club Road
Nashville, TN 37221
I am the mother of a four-year-old boy and a seven-year-old
girl both born with distal arthrogryposis of the hands and feet.
My forty-year-old husband was also born with distal arthrogryposis
although he was told that his condition was not genetic. In 1988
through Vanderbilt University Hospital Genetics Counseling, we learned
we have a 50% chance of having a child born with distal arthrogryposis
with each pregnancy. The arthrogryposis gene first showed up in
my husband through a gene mutation from his parents and now has
become a dominant gene for us. No arthrogryposis has been found
in my husband’s past family history. Our two children will
carry the gene with them and will have a 50% chance of having an
arthrogryposis child with each pregnancy of theirs.
We are fortunate in that our children are able
to walk, run, take gymnastics and have no physical or mental limitations.
My husband enjoys playing golf and tennis and has no limitations.
Physical splints did not help my children. Surgeries
of both the hands and feet were necessary to reposition the bones,
ligaments and tendons. I have learned a lot about distal arthrogryposis
in the last seven years and would be glad to correspond with others
in the same situation.
36 Honeysuckle Drive
Amelia, OH 45102
I would like to introduce myself as a thirty-six-year-old
mother, who is affected with arthrogryposis. My name is Kimberly
Slone, I have been married twice and divorced twice. I have two
great boys, ages fifteen and eleven. My fifteen-year-old son has
attention deficit hyperactive disorder, which is a big job in itself.
I have been a single parent the majority of my children’s
lives. It’s been very hard. I’ve changed diapers with
my teeth and I’ve held baby bottles with my chin, but somehow
the Lord guided me through these trials and many errors. Giving
childbirth with my first son was super easy, only seven hours of
labor with no pain killers, regular vaginal birth, very easy. The
end result was a healthy seven-pound, five-ounce baby boy. However,
with my second son, I gained sixty-eight pounds. The doctors had
to induce my labor. Labor was twenty-seven hours of pain. I required
five epiderals, anapisitomy and anapisarectomy. After all that,
I delivered a nine-pound, eleven-ounce boy, but it wasn’t
quite over. Complications quickly set in. Four operations later
I brought home my beautiful baby, a true gift from God. It just
goes to show the world that a handicapped person can have children.
God has not taken this right from us.
Our techniques in raising our children may be different
than others, but the babies sure learn to adapt. Our nature allows
us to adapt as children and as parents.
God bless you all and may many babies be born
and Kim Oliphant
22520-14th Pl. W.
Bothell, WA 98021
Michael and Victoria Jimenez
5367 Grace Place
Los Angeles, CA 90022
Special Friends Forever
When you think of children, the first thing that
comes to mind is a very active, playful child; crawling, walking,
running and jumping. For most, but not for all...We would like to
share with you the story of a very special friendship that came
about as a result of our wonderful AVENUES newsletter!
Our story begins with a phone call that was made
by Victoria Jimenez to the Oliphant family upon receipt of the June,
1995 newsletter. Victoria was interested in the story that Kim Oliphant
had written about her daughter, Nicole. Well, I guess you could
say that the rest was history! Once these two ladies started talking,
there was no stopping them!
Alyssa Jimenez, 2-1/2, lives in Los Angeles, California,
with her parents Michael and Victoria and brothers Chris and Mike.
Nicole Oliphant, three, lives in Bothell, Washington with her parents
James and Kim, brother Kyle and sister Cassidy. Both girls have
arthrogryposis (amyoplasia type). Their stories are so similar as
each has been serial casted since birth and undergone club foot
surgery, ankle releases, knee releases and tendon releases. The
girls were so very excited to hear about one another and could not
wait to meet. The thought of meeting a new friend who also had “special
hands and legs” was one of excitement and curiosity.
In November of 1995, these girls met for the first
time when the Jimenez family came to Seattle for an arthrogryposis
clinic held at Children's Hospital. Alyssa and her family came over
and spent the night with Nicole’s family. What a time to remember!
To watch these girls interact with one another was a truly heartwarming
experience, one our families will never forget. Alyssa took great
pride in showing Nicole how to scoot on her bottom! They enjoyed
dinner in Nicole’s playhouse where they engaged in “grown
up” talk. Both girls have above average intelligence and their
conversations throughout the evening were entertaining, to say the
least. They compared stories – what they enjoyed doing, what
they had, what they were going “to be” when they grew
up. You would never know otherwise that life would continue to hold
special challenges for these two. Each of the girls have electric
wheelchairs, completely understanding “the rules of the road.”
Nicole is in leg braces and can stand with support from behind.
She is using a walker to get around and for added mobility. Alyssa
just had knee releases and will soon be standing on her own!
The Oliphant family will be visiting the Jimenez’
in June to help celebrate Alyssa’s “3rd” birthday.
Then Alyssa and Nicole are off to Disneyland for the first time!
Thank you to AVENUES for bringing our two families together. We
hope that our story will inspire other AMC families. It’s
never too early to begin building friendships for our children.
Though Alyssa and Nicole both have friends without special needs,
there is no comparison to sharing a friendship with another special
needs child. Though we live far apart, we are committed to being
“Special Friends Forever.”
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From the Medical
S. Nelson, M.D.
Department of PM&R
CS Mott Children’s Hospital
We continue to have arthrogryposis clinics four
times a year with pediatric PM&R, pediatric orthopedics, P.T.
and O.T. present. To schedule an appointment, please call 313-936-7185.
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Tell Your Air Travel Stories
Access to the Skies, a program of the Paralysis Society
of America, wants to hear from travelers with disabilities about
their experiences in flying. They’re collecting information
to find out how well airlines and airports are complying with the
Air Carrier Access Act by accommodating travelers with disabilities.
If you've flown recently or plan to fly soon, call toll free at:
1-800-643-8245, see also http://www.computek.net:80/access95.
Autobiography of Goodwin Hale
A 65-year-old retired lawyer with arthrogryposis and has
recently published his autobiography, Just a Krooked Kid.
The price of the books$11.55 each (Texas residents must add 95cents
per copy sales tax) plus $2.50 per order, shipping and handling.
Some free copies available to limited-income families. Contact Goodwin
Hale at 541 S. Ayrshire, Crosbyton, TX 79322, 806-675-2469.
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