vol. XVIII, no.1, January, 1997
Researchers in England have recently identified
that there is an autoimmune cause for Arthrogryposis in a small
number of families. At New York University, we are collaborating
with the group at Oxford University to see how common a cause this
Families with a child with Arthrogryposis are
being recruited for a research project to help understand the cause
of Arthrogryposis. The project will look at certain antibodies in
the blood of mothers of children with Arthrogryposis. The study
involves a short telephone interview and a sample of blood from
the mother of a child with arthrogryposis. The blood sample can
be sent regardless of the location of the family. If interested,
please call Dr. Bob Wallerstein at 212- 263- 1099, Fax: 212- 263-
7590, or e-mail waller01@
mcrcr6.med.nyu.edu for more information.
[back to top]
Mr. John Sneddon (Xetro@msn.com)
has arranged to have an arthrogryposis bulletin board established
on the Internet. To reach the bulletin board point your web browser
Select the “View the Board” button on that page. You
can post or reply to messages on the board as well find other information
related to arthrogryposis or disabilities in general.
John writes that the bulletin board is not meant
to be a replacement of the Avenues e-mail list but as an alternative
resource for those who seeking information on arthrogryposis.
Note: The Avenues e-mail list, managed by Diane
Voigt, works on a different principle. Iinstead of posting messages
on a bulletin board, you mail your messages to the list server and
the message automatically goes to everyone on the list. To subscribe
to the Avenues list server, send a message to MAISER@
hoffman.mgen.pitt.edu. Leave the subject line blank. In the
body of the message, type SUBSCRIBE AVENUES. For questions about
the list, send a message to: Diane@hoffman.mgen.pitt.edu.
[back to top]
New Electronic Mail
List for Disabled Parents
Eric Voigt writes:
For all who are interested, there is a new mailing list on my server
that I’m really excited about. It’s called Parents-Chat
and it is intended to be a forum for disabled parents. The creators/primary
moderators of the list are Trish and John Day (firstname.lastname@example.org).
For more information about them and their daughter Diana, check
out their web page at http://ourworld.compuserve.com/homepages/
Trish_and_John.html. (I think that’s right—not sure).
Of course, membership is open to anyone/everyone interested. To
subscribe, send a message to: MAISER@hoffman.mgen.pitt.edu.
Make the first line be: subscribe Parents-Chat with nothing else.
You’ll get a confirmation message with further instructions.
If you have any questions, contact either myself Supervisor@server1.mgen.pitt.edu
Phone: (412) 648-9549) or Trish Day.
[back to top]
New Internet Chat
Location for AMC
Carly Matthews writes:
Attention to all who have been unable to participate in the support
group chats: we now have a chat on IRC that is open to anyone with
access to the Internet! Gaby and I have spoken and have agreed to
coordinate our meetings together; I will hold the meeting on my
channel on IRC the first Wednesday of each month at 7:00 p.m. Pacific,
and Gaby will continue to hold the meetings on America Online the
third Monday of each month. Both meetings will have the same topic.
For more information on how to participate in
these online chats, contact Carly at email@example.com
or Gaby Hendrichs at firstname.lastname@example.org.
[back to top]
German Support Group
An invitation from Karl-Heinz Umber:
We are glad to invite you to the first meeting for adults affected
with Arthrogryposis. The two-day meeting will be take place in NeckargemÅnd,
Germany. We are located in the “Reha- Zentrum” in NeckargemÅnd,
a town near Heidelberg. The meeting will be held from seventh until
the eighth of June, 1997.
Are you interested in participating? The whole
accommodation will be organized by the IGA group. Dr. Axt, an orthopedist
with experience in AMC and Mrs. Hahn- Appold, a specialist in therapy
will talk to you. Both are from the university hospital of Heidelberg.
Furthermore you can discuss some aspects of AMC with other participants
Please note that the whole meeting will be held
in German language.
If you have further questions or need more information don’t
hesitate to contact us by fax ++49 7761 57109 or e-mail email@example.com.
[back to top]
Our special thanks to Miss Amy Lee Laurencelle,
Wendy Atterbury, and Oscar Castro for their efforts in putting on
a benefit art auction for AVENUES over the Internet. Miss Laurencelle
organized the effort. Ms. Atterbury donated the Internet site and
handled the auction. Oscar Castro donated the oil painting that
was auctioned. Our thanks go also to Maureen O’Hara, the winning
[back to top]
Arthrogryposis Clinics have been scheduled for
April 30, July 30, and Oct. 22 at the Children’s Hospital
and Medical Center in Seattle. The clinic includes Occupational
and Physical Therapy, Orthopedic Specialists, Genetics and Nursing.
A room is reserved from 12:00–1:00 p.m. where parents and
kids can bring their lunch and meet with other families. Call Shannon
at 206-526-2180 for an appointment or Lyn Sapp at 206-528-2644 for
information about the clinic.
[back to top]
The second annual Arthrogryposis Picnic is scheduled
for August 9, 1997, at Moundview Park in Newtown, Ohio. The time
is 11:00 a.m.–4:00 p.m. Contact Kimberly Slone at:
36 Honeysuckle Drive
Amelia, OH 45102
(513) 734-0360 or
Fax: (513) 876-3360
Ms. Slone writes: Please write or call for input.
All help is welcome and needed. Hope it will be as enjoyable as
last year’s. Hope to see you there.
[back to top]
Summaries of recent articles on arthrogryposis
from the Medline database, National Library of Medicine
Title: Arthrogryposis associated with
unsuccessful attempts at termination of pregnancy.
Am J Med Genet 1996 May 3;63(1):293-300 by JG Hall, Department
of Pediatrics and Medical Genetics, British Columbia’s Children’s
Hospital, University of British Columbia, Vancouver, Canada.
Abstract: We report three cases of failed termination of pregnancy
in which the children were subsequently born with arthrogryposis
(AMC, multiple congenital contractures). Arthrogryposis is a sign
with many causes. We suggest that the multiple congenital contractures
seen in these children are due to vascular compromise [reduced blood
supply] during the attempted termination with secondary loss of
functional neurons leading to fetal akinesia [absence of movement]
and subsequent contractures. Two of the children have additional
evidence of intrauterine vascular compromise. Limitation of movement
secondary to the rupture of the fetal membranes and continuous leakage
of amniotic fluid after the attempted termination may have compounded
the contractures in two of the children.
Incidence of maxillofacial involvement in arthrogryposis
J Oral Maxillofac Surg 1996 Aug;54(8):956-9 by Steinberg B; Nelson
VS; Feinberg SE; Calhoun C Section of Oral and Maxillofacial Surgery,
University of Michigan, Ann Arbor 48109-0018, USA.
Abstract: purpose: This study determined the incidence of maxillofacial
[upper jaw and face] involvement in patients diagnosed with arthrogryposis
multiplex congenita (AMC). Patients and methods: Twenty-three patients
were evaluated by the pediatric physical medicine and rehabilitation,
orthopedic surgery, and pediatric oral and maxillofacial surgery
departments. Any patient in whom the diagnosis of AMC was in doubt
was excluded from the study. All patients with limited mandibular
function underwent computed tomography (CT) examination of their
temporomandibular joints (TMJ). The results of physical therapy
were followed. Results: Five of the 23 patients diagnosed with AMC
were found to have maxillofacial involvement, eg, presence of cleft
palate, Robin-like sequence, high-arched palate, open-bite deformity,
facial muscle weakness, esophageal dysfunction, and limited mandibular
[lower jaw] opening. No TMJ abnormalities were found by CT scan.
Physical therapy was used for treatment of the limited opening,
but relapse occurred quickly after therapy was discontinued. Conclusion:
The incidence of maxillofacial findings is similar to that of most
other reports. Treatment involves surgical correction of abnormal
anatomy when possible (i.e., cleft repair), symptomatic management
(i.e., esophageal dysfunction), and physical therapy.
Title: Medial-approach open reduction
of hip dislocation in amyoplasia-type arthrogryposis.
J Pediatr Orthop 1996 Jan–Feb;16(1):127–30 by Szoke
G; Staheli LT; Jaffe K; Hall JG Department of Orthopedics, Children’s
Hospital and Medical Center, Seattle, Washington 98105, USA.
Abstract: In 95 children with amyoplasia-type arthrogryposis multiplex
congenita, 40 hip dislocations in 26 patients were found. In 16
of these 26 patients, bilateral [both hips] (nine patients) and
unilateral [one hip] (seven patients) dislocations were reduced
by a medial-approach open reduction. The mean age at the time of
surgery was 8.9 months. Acetabular development was satisfactory.
Complications included one early re-dislocation, two hips with stiffness,
and four of 25 hips with avascular necrosis (types 1 and 2). Overall
80% (five of seven unilateral, 15 of 18 bilateral hips) were rated
good and 12% fair, and 8% (one of seven unilateral, one of 18 bilateral)
were poor. Stiffness or asymmetry was not observed in the nine bilateral
cases. This study suggests that dislocations in infants with amyoplasia
may be successfully reduced by medial-approach open reduction. Bilateral
reduction and concurrent correction of other lower limb contractures
may be accomplished during the same surgical session.
[back to top]
From Families Around
Michael is twenty-seven months old and has strong
triceps but no biceps. He is unable to bend his elbows actively
but has good passive range of motions in both of his arms. He has
to use a surface, table, or his knees to put his hand to this mouth.
We heard muscle transfers are more beneficial at an early age like
two–three year rather than one who’s nine–ten
years. He’s a candidate for a triceps to biceps transfer as
his triceps are strong. If he has strong lattismus or pectoralis
muscles, they can transfer one of these to the biceps. I am so afraid
that if he has the triceps transfer, he may lose a lot of the triceps
function and his arm may become useless. He is able to do a lot
with his arms now except for active elbow flexion. I am searching
for answers as to what should be done for my son. If anybody knows
anything or has experienced this muscle transfer, please advise.
Michael’s future is in our hands.
& Stephanie Ginsberg
1356 Idaho Street
Ashland, OR 97520
Our son, Morgan, born 8-28-91, adopted in 1992
from Brazil, continues to improve, walking most of the time without
crutches now, and occasionally without his braces as well! He loves
preschool and looks forward to kindergarten. We welcome any suggestions
on toileting strategies. His hands and arms are not affected by
AMC, but we have been told he is missing some pelvic muscles.
Thank you so much for printing the picture and
description of little Tami, the two-year-old girl with AMC in Brazil.
We have had several calls from interested families. At this point,
we are still waiting for the right family for Tami, but we are very
hopeful as calls continue to come in. We will keep you posted.
Now, another plea: Claudio was born June 20, 1990,
in Brazil. He has good control of his head and trunk, with all four
limbs and some mouth muscles affected by AMC. Although he doesn’t
talk, he smiles and makes sounds. He sees and hears well and appears
bright, understanding what is said to him. He scoots on the floor
and grabs things with his left hand. He has had surgery on one foot
and receives speech and occupational. therapy regularly. As you
can see from the photo, he is beautiful. He is a sweet child who
has no future in Brazil. If you or anyone you know would consider
adopting this child, please don’t hesitate to call. Photos
and video available. Thank you again for helping us find homes for
these special children.
8624 N. Mahogany
Tucson, AZ 85704
Naomi, our daughter, is interested in interconnecting
with other teens and adults with arthrogryposis and learning more
about resources and research. She was very interested in being put
on your mailing list to receive the AVENUES newsletter.
and Wendy Dercks
1004 Sheridan Court
Kaukauna, WI 54130
Having a child with arthrogryposis is very frustrating
when it comes to finding appropriate medical doctors.
Our child is involved in her upper extremities
only. We have been unable to find a qualified doctor with experience
in tendon transfers (in order to gain elbow flexion). I’m
writing in hopes that someone who has already found such a doctor
will contact our family. I also hope anyone can tell us of the pros
and cons of having such a surgery. Any type of input would be greatly
3516 Hampton Highway
Yorktown, Virginia 23693
I am writing to thank you for publishing this
newsletter and to tell all of the readers of the surgery our son
Cody (21/2) just had on 3/13/96. We went to St. Mary’s hospital
in Richmond where his orthopedic doctor, Dr. Chester Sharps, did
a muscle transfer in Cody’s left bicep. The muscle was taken
from his triceps on the left side and moved to the bicep area..
We will not know if the operation was a success until the cast is
taken off on 4/19/96. I do, however see a difference in the way
Cody moves his arm and the way he uses his hand. I wanted to write
to let everyone who has an interest in this, know how he is doing,
and if any one would like to talk to us about the operation or how
we felt about it, to do so.I am home most weekdays until 5:00 pm.
and after 9:00 pm. Please feel free to call me. I love to talk about
things and to hear what other people are doing to help their children.
and John Gialamas
17025 S. Hobart
Orland Hills, IL 60477
Alyssa will be a year old in May and has been
diagnosed with amyoplasia and arthrogryposis. She has a twin brother,
Matthew, who is in good health and not affected. Dr. Judy Hall,
a geneticist, could not quite diagnose Alyssa because she does not
have the characteristic’s of amyoplasia, yet has little functioning
muscle or tendons in her lower legs. She recently underwent club
foot surgery and will have bilateral knee surgery in the near future.
Alyssa has good upper body strength and has been able to pull herself
along and keep up with her brother. We are thrilled with her progress
and are confident that she will be able to do anything she wants
to do in the future.
I have kept in touch with several families concerning
arthrogryposis, but have found none with similar problems. Alyssa
has a very small tight jaw and only opens to 1/2 inch. I know a
tight jaw is not unusual, however, Alyssa does not smile yet and
seems to be lacking the musculature or tendons in the mid-portion
of her face. She has many expressions and is able to make sounds
with her lips/mouth, but is not able to smile. I would like to speak
with anyone who has had similar problems and find out what is in
the future as far as her jaw is concerned. Also, we are a little
confused if we should seek out a Cranial Facial expert, an Orthodontist,
a Neurologist, or all of the above. We are currently being followed
by a Cranial Facial Team, but I don’t think they have ever
seen any case like Alyssa’s. The only prognosis we are receiving
is to wait and see. I am not happy with that, I need to know. Please
feel free to contact me with any comments or suggestions.
585 Grace Way
Scotts Valley, CA 95066
I am fifty-nine years old and was diagnosed with
mild AMC at age five, by Dr. Frank Ober, in Boston. My parents and
our small-town physician in New Hampshire realized I would not outgrow
walking on my toes. Dr. Ober did surgery to fuse my ankle bones
and release my heel cords when I was ten. His clinic did follow-up
until I was in my twenties and moved to California. My life was
fairly normal until about five years ago. I kept a cane in my car
in case of emergency. Now, after occasional episodes when my knees
suddenly start to collapse, I can barely walk with two canes and
must use a wheelchair for distances. My doctor referred me to Stanford
Orthopedic Clinic for help with complications of AMC and aging.
The doctor who saw me had never treated an adult. He took X-rays,
referred me for neurological testing, and wanted me to go to Stanford
Orthopedic Pediatric Division. I found that humiliating and inappropriate.
Over the years, I have seen orthopedists and physiatrists
from time to time. Whenever I go to a doctor for AMC, I am told,
“I saw one or two children twenty years ago,” or, “I
read about your condition in medical school.” The therapists
where I go for pool therapy had only treated children many years
ago. As I get older, I am frustrated by the lack of knowledgeable
medical care available. Doctors and therapists are kind and willing—they
just don’t know what adults need. We have such questions as:
What therapies are appropriate to stay mobile as I get older? What
should I do about complications I am experiencing? Is my case genetic?
Can and should I have children?
I seldom bother to seek medical help—what’s
the use? People in their fifties and sixties have quite different
problems from two- and three-year-olds. Why should I pay fees to
a specialist who knows less of my condition than I do? The children
currently being seen in pediatric clinics are growing up. Where
are they going to get knowledgeable professional help?
Again and again I see the same story: adults with
AMC are referred to pediatric clinics, which do not have experience
with older people with AMC and they are reluctant to seek help.
Some have been refused treatment by the clinics which followed them
as children and can find no other source of assistance.
Please—do establish a clinic for adults
with arthrogryposis. It is much needed.
3579 Ruffin Road #132
San Diego, CA 92123
I just wanted to thank you for what you guys did
for my father. He was diagnosed with AMC, and as a child, he was
told that his life-span could be expected to be eighteen years.
Well, always a fighter, my father lived to be forty-eight years
old. He passed away in 1993, only meeting five other people, personally,
that had AMC. When he found out about AVENUES, it let him know that
he was not alone. That really had a profound affect on his remaining
years. I just thought that you might want to know that.
I do not know if you have requests for this, but,
if there are any children of AMC people that would like to have
a “pen- pal,” I would be happy to volunteer.
Again, thank you all for bringing some light into
my father’s life!
After fifty years on this planet it’s still
interesting to find new people to relate to. AVENUES looks like
a great place to connect to others who have a similar tale.
While not too sure of the medical jargon, I believe
I fit into the category of distal AMC. Had a lot of surgeries as
a kid at Shriner’s, not positive it was worth it. Sometimes
children could be given a little more slack in the growing up process.
As an adult, I had to come to terms with the medical establishment
and its “fix-it” attitude prevalent in my childhood.
Thirteen different surgical procedures—if I remember correctly.
The pain caused by people with “good” intentions is
still a source of confusion for me.
On another subject, I’m currently an Adaptive
Computer Specialist at a community college. I have found computers
to be the tools of the trade for me in life and have been working
with many different types of people with disabilities for over twenty
years. I’ve worked for VR, private consulting, school districts
and universities, etc. I’m a mouth- wand user (looks more
elegant than the word mouthstick) and have researched most anything
you might want to know concerning assistive technology. If there
is any way I can help please feel free to contact me at the above
e- mail address.
1913 Bookbinder Drive
Las Vegas, NV 89108
I spoke to you after my son was born with distal
arthrogryposis. He is now two years old. Have you received any information
on the genetic testing in Salt Lake City, Utah? I spoke last year
with the doctor doing the research but have heard nothing since.
I would be interested in corresponding with other families with
8027 W. Denton Lane
Glendale, AZ 85303
I’m writing AVENUES to let you know about
my situation. I’m eighteen years old with a newborn baby boy
named Jason. He was born with arthrogryposis. It is very emotional
for me, being so young, but I feel I can pull through this. I have
to for my son!
There is one thing that has really been bothering
me. I’ve read your newsletter and I haven’t come across
one parent that has had their child walk normally. I feel that if
I could at least talk or read about one parent who has had their
child walk, I could look at this differently. Please help me find
this one parent!
Our daughter, Molly Kate was born two years ago
with arthrogryposis. She was affected from her neck to her toes.
When she was born, her toes were by her ears . . . imagine sitting
on the floor, spreading your legs out, and trying to touch your
chest to the floor . . . that was the position she was in when she
was born. Her head was turned to the right, and her elbows were
contracted, and her hands were in tiny fists. Need I say: this was
totally unexpected! We had no idea. Let’s just say that we
don’t go to that OB- GYN practice any longer!
Therapy started on day two with a hot pink cast
that went from her hips to her ankles and from her shoulder to her
hands. Her contractures worked themselves out so that she went through
almost three full sets of splints the first week. I was so proud!
Then I saw the bill!
Her progress has been tremendous. Thank God for
the fine people we met at Child Development Resources in Williamsburg,
and our terrific therapist, Kim Wesdock, at Children’s Hospital
in Richmond. Through all the hard work of those great people, Molly
has come so far from when she was born. The people at the NICU didn’t
even recognize her!
First the “Can’ts”: Molly has
low muscle tone from neck to toe. Any muscle she has, she’s
built up herself. She still can’t walk, crawl, or pull herself
up to a sitting position.
Now, the “Cans”: Boy, can she roll
and navigate! She can get from one side of the house to the other
faster than you can imagine. Her leg contractures are virtually
gone, and her elbows are somewhere around 130–150 degrees.
She has the longest, thinnest fingers I’ve ever seen (is piano
in her future?) She can talk a lot.
Now we ask for your readers’ help: Is there
anyone else out there whose AMC was caused by Congenital Fiber Type
Disproportion? This was determined through a punch biopsy at the
Medical College of Virginia with Dr. R. Leshner. Her Type I muscle
cells are smaller and more abundant than they should be. If you
or your child has CFTD please e- mail us.
Two things are up with us that we could use some
(A) We went for our (gulp!) first wheelchair
evaluation yesterday. It’s a beaut: cadillac, I’m
so sure. It’s an Enduro “tyke” with front wheels,
so she can hopefully push it herself. How did you all handle your
child’s first chair? Any advice? Did you notice new-found
(B) We’re hassling with the local school district with Molly’s
IEP. This is her first; we’re graduating from early intervention
into the school system. Help! Help! What have you learned? We’ve
made a passel of mistakes, simply by being too trusting! Let me
just start by saying her IEP, which we signed, has no PT,OT, or
Speech evaluations or objectives! Little did we know, but now
we do! Any advice would be helpful.
I also have two things to offer out:
(A) anyone facing their first IEP, I’d
be happy to share what we now know, so that you don’t make
the same mistakes.
(B) Great information: If you are covered under the MDA, they
will cover wheelchair expenses that your insurance won’t.
In Virginia, they cover up to $1700. I don’t know if that’s
a national number. Plus, ours has loaner equipment: shower chairs,
bedside commodes, transition boards for wheelchairs.
Plus, has any reader had multiple children (siblings)
with AMC? We’re desperate to know. Your newsletter is such
a blessing. Our first therapist, Kim Wesdock at Children’s
Hospital in Richmond, was/is a specialist in AMC. She passed your
newsletters on to us. When I found your homepage on the ’net,
all of a sudden I felt less alone. It’s good to know that,
in a world of typical babies, there are other families who know
what we’re going through.
Hi! My name is Jeff Hoy. I had a son with AMC;
because of it he had to have a feeding tube. We replaced this with
a G- tube, which we later replaced with a MicKey button.
During the operation to place the button, the doctor
misplaced the tube, and Chris subsequently died. We are now trying
to find some info on the MicKey and documentation on the proper
procedure for installing it as support for a malpractice trial.
Any information you could help me with would be greatly appreciated.
I have recently learned of your newsletter from
Gina Loren. My daughter, Crystal was born with AMC. She is now sixteen
years old. She is treated at Florida Elks Children’s Hospital
at Umatilia, Florida.
Dr. Charles T. Price is her orthopedic surgeon. She had her first
surgery at the age of seven months to release her right knee so
it would bend. She then had surgeries to release her right elbow
followed by surgery to release her left elbow. She has also had
heel cord release.
Crystal has always been a very happy and independent
child. Crystal uses no special adaptive equipment to write or use
the computer. She is a very bright child. Most of her classes at
school are gifted classes. She learned to swim at an early age.
She also learned to bowl. She has many bowling plaques and trophies,
including bowler of the year.
Crystal also participated in the Miss Teen All American Pageant
1994 at Daytona Beach, Florida. She won the Amity Award. She recently
acquired her operators drivers license. She has no special equipment
to drive except hand held, push button start because she was not
strong enough to turn ignition. It took some searching to find a
truck she could operate without special equipment.
I would be interested in corresponding with anyone
and sharing what information I have on how Crystal has been able
to accomplish all that she has. I would also be interested in speaking
with any young women who have AMC. Who have married and raised children
and the problems they may have encountered.
I am a twenty-one- year- old journalism student
with AMC at the University of Missouri at Columbia. My condition
affects my arms and legs. Since I can’t use my arms and hands,
I do most everything with my toes. I also use a power wheelchair.
I am in my third year as a student at MU. So far,
I’ve been able to complete the requirements for a journalism
degree at one of the most renowned journalism schools in the country
without many problems. The school has required me to work as a reporter,
an editor and a designer at the Columbia Missourian, Columbia’s
daily newspaper. I’ve also been successful in hiring personal
care attendants and to adapting to life with my family six hours
away in Kansas. This year I moved off campus into an apartment with
three other students, and this summer I will be working as an editing
intern at The Arizona Republic in Phoenix.
As I approach graduation, I would be interested
in talking to others with AMC who have adapted to life in the “real
world.” I’d like to know more about finding attendant
care, accessible housing and transportation in larger cities. Also,
does anyone know about wheelchair accessible driver’s education
programs? The fact that I cannot drive a car is one of my largest
obstacles right now. I’m also interested in having children
someday and would like to learn more about pregnancy with AMC. Also,
if anyone has questions about adapting to either college or a career
in journalism with AMC, please let me know.
12811 N.W. Marshall Court
Portland, OR 97229
My daughter, Samantha, has just turned one year
old. She is a beautiful, active little girl who loves people and
loves to laugh and yell. At birth, she appeared to have thumbs that
were buried in her palms and kept her fists tightly closed. Her
feet appeared to be somewhat stiff, although at the time is was
thought to be a result of the lack of space in the womb. One year
later, two surgeries to repair Congenital Vertical Tali in her feet,
and splinting of Samantha’s hands, I am happy to say the our
little girl seems as “normal” as any other.
We did not have a diagnosis for Samantha’s
condition until her second surgery. The diagnosis is that of Distal
Arthrogryposis and is thought to be extremely mild. Her doctor’s
feel that the combination of treatments that we are pursuing will
provide Sam with a very bright future. At the time I originally
contacted you by phone, I was both relieved to have a diagnosis
and desperate to understand more about her condition. Your advice
and the packet of materials have empowered me to seek out specific
answers to my questions and to make me a much stronger advocate
for my daughter. Mary Anne, I thank you for your suggestion to seek
out the Arthrogrypotic Clinic at Children’s Hospital of Seattle.
We are taking Sam up there on May twenty-ninth and have two days
of appointments scheduled. My husband and I are very optimistic
about the future for our daughter. I am excited to hear what the
doctors at the clinic have to say.
This afternoon we are visiting Samantha’s
orthopedist and will be thrilled to show him that three weeks after
the removal of her casts, our little girl is taking steps at walking
with her AFOs despite his opinion that her walking would be delayed!
Thank you from the bottom of our hearts for providing us with information
and support in dealing with this condition. You have given us the
gifts of knowledge and hope that no amount of thanks can ever repay.
123 Terrell #47
Alice, TX 78332
Hello, my name is Victoria and I have a thirteen-month-old
little boy named David, with AMC. David’s arthrogryposis affects
all four limbs. His arms cannot move at all and his legs are in
an upside-down “u” position. I am so grateful for finding
out about AVENUES. Since getting your packet of information, I feel
the world has been opened for David and I. I would love for families
to write to me so we can share information.
1727 Kenneth Avenue
Arnold, PA 15068
I am writing to you regarding my daughter, Jocelyn
Justina Williams, born June 4, 1995. When she was born, the first
problems we noticed were her hips were out of place, she had an
extra big toe on the right foot, and a two-vessel umbilical cord.
After a few weeks, we noticed her hands stayed clenched.
After a chromosome analysis and many, many visits
to hospitals, she was diagnosed with arthrogryposis. She is now
111/2 months old. Her extra toe was removed at six months of age,
but her foot is similar to a club foot. She also has a leg-length
discrepancy on that same leg. Her hands have come along way, although
her middle fingers still stay bent.
Through early intervention and PT and OT, she
has come a long way (especially the AFOs and therapy on her hands).
We have been to many doctors and they have never seen a case of
arthrogryposis so mild. How alone I felt until Shriner’s Hospital
gave me some of your newsletters! Although her case is so mild,
it felt so good knowing there are other parents out there who are
going through similar situations. She also has a very short stature,
which is significant with this condition (twenty-five inches long
at 111/2 months old). She has two brothers who spoil her terribly!
They are in perfect health.
I would like to hear from anyone whose case is
similar, as the doctors have never seen a case so mild. I have realized
through this troubling year how special we parents are to have these
special children. God bless the children!
and Maria Sims
1217 Northwood Road
Jacksonville, Florida 32207
I’m curious as to how many of the mothers
of children with AMC had taken fertility drugs and/or gone through
a fertility procedure prior to pregnancy. My wife, Maria, had taken
fertility drugs prior to a Gift procedure which resulted in twins,
a boy with AMC, and a girl who is healthy.
5720 Crystal Lilly Court
Las Vegas, NV 89130
I am a twenty-four-year-old affected with AMC.
I just recently became aware of AVENUES and I have enjoyed reading
about other peoples’ experiences with arthrogryposis. I have
only known one other person with AMC and that was my older brother
who unfortunately passed away in 1990. Most people I talk to have
never even heard of arthrogryposis which often leaves me feeling
I guess I could be considered as having a moderate
case. All four of my limbs are affected. My arms are contracted
into a “bent at the elbow” position and my hands are
contracted (I have a little wrist movement). When I was younger,
I was given the option of surgery to straighten my arms, but refused
because I’ve learned to manage quite well. Even though my
hands are contracted, I have very little difficulty picking things
up. I even do crafts such as counted cross-stitch. I cannot bend
at the hips or knees a whole lot. This makes sitting difficult so
most of the time I stand. I can walk unassisted (but use a wheelchair
for distances). I can’t climb most stairs.
I have had surgery for my club feet and also had
a spinal fusion. Unfortunately, the spinal fusion didn’t help
my scoliosis., At the age of twelve, I had severe respiratory problems
and had to have a trach tube inserted and put on a vent. To this
day, I still have the trach and must be on the vent part of the
day. I have been in the hospital more times than I can recall over
the past thirteen years with respiratory problems (sometimes very
severe), but I always manage to bounce back. I always attended regular
classes and graduated on time despite all I’ve been through.
I am currently taking college courses to become a clinical social
worker. I also do volunteer work in nursing homes.
I would very much like to get in touch with others
my age (any age is OK, too) who have AMC whether or not they are
affected in the same way.
We have been active advocates for disability issues
for years. We lived in the Denver area for many years but when we
moved to Shasta Lake, CA, we lost most of our contact due to the
small rural attitude here. Now with our computer we have found a
new world of contacts. We are most interested in researching grants
for new programs for home employment and education. Due to her disability,
Beverly was pushed around and finally out of the public school system
and was never able to finish her education. She raised three children,
one profoundly retarded and physically disabled due to a car accident.
She learned to change diapers and do dishes with her feet and used
her inventiveness to get things done.
I met her twenty years ago, shortly after losing
my right leg to cancer. We got married in 1988 and became a very
powerful team. With the three disabilities to deal with in our family,
we have a lot of experience in a lot of different disability issues.
We hope to be able to do some good in this world now that we can
communicate. If we can be of any help to your endeavors, please
let us know.
Hi! My name is Lawrdel from Rigby, Idaho. I am
twenty-eight years old and have a mild case of AMC. Growing up with
AMC, my parents were protective on what I could do as helping them
around the house until, at the age of seven, I picked up a hammer
and hammered in a nail to a board. From there on they put me to
work around the house.
After that, the quote was I’ll try everything
once before I give up. In sixth grade, I decided to sign up for
a sport called wrestling. I wrestled through twelfth grade. I’ve
gone through three years of college and got a job with the government
doing adminitive assistance. My family now includes a boy at 21/2-year-old
and one due in November.
It has been nice to know that there are people
around the world that understand what AMC is like. I feel that no
one including the doctors knew how to act or treat me with whatI
have to go through life.
Hope this helps with the young group of people
that have AMC: never give up!
822 New Mark Esplanade,
Rockville, MD 20850
I found the most special woman in the world and
married her almost three years ago. There has recently be a new
addition to our family “Adam Noah,” born June nineteenth.
For most of my adult life, I was concerned about the possibility
of passing AMC on to my child. Adam was born healthy, strong, active
and AMC free. I still don’t know what the genetic chances
are, but for Adam, this is one issue he won’t have to deal
with. Anyone with questions, please feel free to contact me.
318 Edward Street
Wagga Wagga NSW 2650
I am twenty-eight (twenty-nine next month) years
old and have AMC. It wasn’t until last month, when we put
the Internet on that I found that I was not in a minority group!
For most of my life I was of the belief that this condition affected
a very small portion of the population. My husband and I looked
up AMC in the medical databases and found the one and only reference,
that being a support group in Ireland. I promptly wrote my life
story and even more promptly received a reply from a lovely family
in Dublin with their two boys aged seventeen and fifteen affected.
The mother sent me more information than I have ever seen before.
I don’t know why it took me this long to actually find out
about my condition but here I am, neck deep in reading material
and corresponding via e- mail. Isn’t modern technology wonderful?
Anyway, like I said, I have never met, nor seen,
nor heard of anyone ever having this condition and back in 1967,
when I was born, very few people had heard of it also. I was promptly
taken to the closest major city—that being Melbourne and was
attended to by the well- known Dr. Peter Williams of Melbourne Royal
Children’s Hospital. He has now retired, I am told, but he
was an amazing man who I was always scared of! Seeing him always
meant another surgery.
One thing led to another and I corresponded with
a number of people on the list that I was given from Ireland of
addresses for major support groups. England was the first to reply
to my letter with wonderful brochures and information. To my surprise
there was an Australian group too, who also replied. There are only
sixty members here, but they say that a lot of cases are incorrectly
diagnosed so those numbers may not be a good indication of the real
number of cases. Anyway, I am one of those cases. I guess this whole
thing has just blown me away. The number of people affected and
the differing degrees of severity is amazing. I guess I never really
bothered to find out all that much about AMC as I am an extremely
well- adjusted, happy and very functional person and the way life
was presented was the way it was received.
I am still in the process of being able to have
access to my medical file as I am not sure how many operations I
have had and the types of operations they were and for what purpose,
so I can’t give you many specific details—yet! I only
that my AMC is confined to my upper limbs only. I was born forcep
delivery, after about twenty-three hours, breech with two black
eyes. My mother was seventeen at the time of my birth and being
so young must have been difficult as my parents didn’t have
the network of support that is available today. It would have been
a shock for them being so young. My father had a minor accident
in the car on the way home from the hospital from the shock of it
all! I had full fixed extension on both arms, rolled shoulders and
inward turning hands and wrists all fixed. I have never had physical
therapy so my arms and hands are in a fixed position.
We lived in the country and the nearest center
where the surgeries were performed was six–seven hours away
in Melbourne Royal Children’s Hospital. I have had several
surgeries, the first being the fixation of arms in a 90-degree angle,
a rod inserted into my left hand, and a finger extended which was
tucked under my right hand. I have had muscle transfers which did
little but give someone a better knowledge of the internal workings
of an AMC patient. I have also had many splints (mainly to see how
I would cope with a wrist in a fixed extended position). These were
very painful and usually abandoned particularly on the right hand.
The left hand extension has allowed me to be more independent—picking
things up is easier and dressing (it also gave me a job as a typist—I’m
not sure if they didn’t have that in mind when they did it).
My feet are my godsend as they do the heavy and sometimes difficult
duties like bed-making, door-opening, jar-opening, lifting, pushing,
undressing, ho- hum ’cleaning’, tap (faucet) turning
and nearly everything else that requires the effort of hands (feet).
My mother cannot recall how many surgical procedures
there were, after a while you lose count especially when we are
talking some years ago now. I had the last AMC related surgery at
about the age of twelve. Hopefully, soon, I will have access to
that file and be able to fill in the blanks.
The main thing that Mum was told was to do was
to make sure she did not help me too much. This is probably a normal
thing. I actually find myself doing it with my own children. It
makes for extremely independent children with a will to do all and
everything. This does not mean she didn’t suffer watching
me struggle through dressing, etc. But in hindsight, it was the
best thing to do. My advantage though was that my legs and feet
were perfectly formed and they were my asset in the periodsof struggle
I scooted around on my bottom before walking and
my balance was great, I used to stand from a squat position with
no assistance from my arms at all. My children do this as they have
never seen it done any other way!
I attended preschool at age three and, although
I never liked to be far from Mum, it was good for me. At the age
of three, you are very sensitive about everything and toileting
was something I couldn’t manage without help so I liked her
to do it over anyone else! I never really learned to cope with that
personal aspect until I was about eight and even then clothes were
a problem sometimes.
I went to a regular school where the teachers were
helpful. But, it is amazing how there are the terribly cruel and
the terribly wonderful children. I always attracted the helpful
ones, the children who were ’aware’ without knowing
it and I always had lots of friends. In the early stages of school,
(about age six) friends used to help me go to the bathroom (mainly
helping to undress) and I always tried every sport and amazed myself
at the ones I was good at. Looking back, there were moments of anguish
for sure, but there were also ones of triumph. I was good at school,
sometimes better than others, although my skills at math have always
evaded me! I was good at sewing, reading and comprehension.
Just to let you know, sometimes I didn’t
tell Mum and Dad what had happened at school if it had been bad—I
was never one to complain. Once I was punched in the eye by a horrible
little boy for no reason other than I was different. He knew he
was doing the wrong thing and if I wasn’t so scared of him,
I probably would have ’dobbed,’ but I coped with it.
I think I may have even faked a few illnesses shortly thereafter
but he didn’t do it again— luckily. I guess I just didn’t
want to upset anyone or get anyone into trouble. I think this would
be a pretty normal response. Although I was always told never to
use my disability as an excuse for anything.
After a period of adjustment, I really liked going
to school, but the initial entrance and being on my own was scary.
Now- a- days they have special programs in schools with ’helpers’
and I think this could have been good for me in the younger years
of primary school (kindergarten to year six). The period of adjustment
to high school was also scary. PE scared me the most because I was
so competent they expected me to manage like the others but it was
the undressing in a hurry to get to another class that worried me.
This fear was also overcome once Mum put a zipper down the whole
side of my uniform so I could get out of it.
We made a lot of adjustments to clothes, etc.
Velcro was put on a pair of shoes for me before Velcro came out
on the public market, I think. An old boot lacer (usually found
in antique shops) with a small hook on one end and a large loop
on the other, did up zippers and the hook dragged buttons through
button holes. I still use this sometimes. Putting on runners with
elastic threaded through and tied like laces solved the problem
of constantly asking for them to be done up. I use my teeth, walls
to lean against and my feet to dress, but this honestly didn’t
fully evolve until I was about fifteen, Before that I struggled,
did it alone, but struggled.
Now I think of the easiest way to do things. I
often buy clothes a little larger and look at the styles. I never
buy back opening and closing items. Luckily my feet are very strong.
They pull on and off clothes, pull on shoes (one foot puts the sock
on the other then the shoe then that completed foot helps pull the
other sock up to the heal (in a dragging motion). I pull it over
the heal and slip the other foot into an already done up shoe (something
mothers hate—not undoing the laces!). There is a method for
Luckily now there are a lot of things on the market
which can help and you just buy them straight off the shelf. I still
don’t usually eat steak out at restaurants, though. I am not
strong enough to cut it without a serrated edged knife—I have
really good ones at home which I use and cut with. But to save asking
for a special knife, I usually order something that I can cut up.
I have never liked to make a fuss and I stick to the things I know
I can cope with and don’t like to make a scene.
As I said, growing up I always had a lot of wonderful
friends. I’ve played racquetball, went to “Brownies,”
played the electric piano (not with lessons, just alone). I think
this was good therapy for the fingers actually—not unlike
my typing today. I rode horses, was a mad roller-skater, and did
everything my friends did. Swimming was interesting. At the age
of fourteen, my girlfriend taught me how to swim in her backyard
pool—that was a real achievement (I can not swim underwater,
though—my balance is off somewhere there).
I was always scared of the unknown though and it
usually took a few attempts before I had the confidence to do it
well but I always tried. My parents never said I couldn’t
try anything and let me experience everything even if it meant failing.
Realistically, though, there have to be bad days.
At the age of thirteen, Mum noticed while hemming
a skirt for me that the hem was lopsided. Yes, scoliosis in a big
way. At the age of sixteen, going seventeen, I had a spinal fusion
to correct a bad double curve. I really didn’t have much pain
with this before the surgery but it was a good two inches out on
one side. They fused five vertebrae at the bottom of the spine in
what is called a Dwyer’s Fusion. I spent one month in the
hospital, six months with a body cast, and the twelve months of
my eleventh year at school doing correspondence. My parents installed
a bidet and the whole thing was annoying more than painful. I still
get a lot of back pain—just another thing I deal with—but
I shouldn’t and don’t usually, wear high heals, or stand
up for too long or sit for too long without moving around. It wasn’t
until I did some investigations about AMC that I realized that scoliosis
comes with this affliction in 5% of cases. They told me that when
I had the spinal surgery that I would probably have to come back
in ten years for more—we are now eleven years doing well and
I went back to regular school and completed my
high school, boogied at nightclubs, danced with strange people,
travelled alone, lived in a flat with a friend, worked in a different
city, applied for jobs, and got them surprisingly easily, travelled
overseas and loved it all.
I have snow skied, completed secretarial school
for one year, worked as a typist, word processor and legal secretary
for four years, married, had two beautiful healthy girls, Hannah
and Madeleine, aged four and two (there are a few interesting ’coping’
stories there if anyone is interested!). I garden, cook the best
muffins and do my own housework (reluctantly). I love doing cross-
stitch and they are all over my house. I have a wonderful husband,
I am a preschool management committee secretary, work casually at
a local hospital as a booking clerk/telephonist. I’ve done
a lot of things all which I am proud of. I have never let people’s
thoughts worry me and have a super self-esteem. This partly due
to my parent’s attitude as I grew up and the community and
environment in which I lived. There are only 60,000 people in Wagga
now and I’ve been living here most of my life. We were a lot
smaller than 60,000 when I was little and it was a real ’town’
then. I think this personalized community really helps.
People still ask me if I am thalidimide [victim].
I guess this is a product of a time when people with disabilities
were not seen. We are out and about now and it helps with public
awareness if I can explain what I have and also to think that I
am not relatively alone like I thought two months ago. My own child
was staring at a girl in a wheelchair the other day and I had to
explain to her. Even my own children don’t see a difference
There are probably specific questions you would
like to ask—go right ahead. I have had several things modified
especially for later in life. There is one thing I don’t do
and that is drive. But then, I’ve never tried to get my license!
As I said, I have a method for everything! Something may be of use.
I feel that I could be a great help to someone especially in the
’baby’ field. I have acquired a lot of new skills as
a result of motherhood. I will reply to all letters.
You provide a wonderful service for parents. It
is been my experience as the mother of a special-needs son, now
grown, that parents can use information about getting along with
schools, and about getting the best education for their child during
the years he or she is in school. I have spoken to parent groups
and parents are still saying, “The school says they cannot
provide this or that, and we don’t know what to do about it.”
With the help of AOL and the Internet, I can help
parents work through the maze of regular and special education.
I’d like to offer this service for parents . . . if I don’t
know the answer for obtaining the best school services or for working
with the school system, I have access to resources who do—a
number of periodicals about special education and law, and some
local sources. Don’t worry—it is not my intention to
sell my books to parents (although I expect some parents may have
read my articles about families with special- needs kids).
I recently published two books for parents, one
about working with schools called Optimizing Special Education:
How Parents Can Make a Difference with Plenum in New York, and My
Child Needs Special Services; Parents Talk About What Helps And
What Doesn’t with Mills & Sanderson in Bedford, MA. About
ten years ago, I published a glossary of special- education terms
for parents. This book is still listed with the Learning Disabilities
Association in Pittsburgh, PA.
We found this great trapeze play- quilt at the
toy store for our son. It had two criss- crossed flexible poles,
like the kind in easy set-up tents, that fit into sockets in the
corners of the small quilt and crossed over top of the baby lying
on the quilt. We hung toys—jingly ones, rattles, squeak toys,
soft toys, teethers—from the poles. The toys hung down, and
our son had to reach for them, or roll over to them, as best he
could, in order to get to them. It really made him stretch.
320 S. Cullen St.
Rensselaer, IN 47978
Hello, my name is Melissa Morris, and I am a sixteen-year-old
girl with arthrogryposis. As you know, arthrogryposis is not a very
common disease, and I am interested finding other teenagers who
deal with it. Actually, I am interested in finding anybody who I
can correspond with that has this disease.
and Joe Baker
9219 Dayflower Drive
Tampa, FL 33647
Thank you for your wonderful publication! We have
written to you several times and appreciate all the feedback we
have received from other families.
We are wondering if anyone out there has had any
success with TES (Therapeutic Electrical Stimulation). This uses
traditional therapy, computerized muscle stimulation, and biofeedback
therapy. Please contact us if you have anything to share.
and Kim Oliphant
5403-150th Pl. SE
Everett, WA 98208
We wanted to write and let you know of a great
new toy called “Radar” (he’s a robot!). He is
completely voice activated and is geared for ages 4–8 years.
Well. . . with arthrogryposis children, ages 3–8 or younger!
This robot plays educational games, sings, and really is a “pal”
to our daughter, Nicole. Kudos to Fisher Price for making Radar—he
retails ar approximately $50.00—well worth it for the child
who has limited his or her hands. They had us in mind! Wanted to
pass along this great idea to families with young children with
and Laura Patuelli
7211 Fairfax Road
Bethesda, MD 20814
This is to give an update on our son Luca. We
have some of the information could help other families. Luca was
born twelve years ago in Montreal, Canada. He was diagnosed with
atypical arthrogryposis because his condition was limited to the
part of his body below both his knees. It looked more as he was
born with major clubfeet. He also had weakness on his scapula muscles
blades. Originally, he was followed at the Shriner’s and Montreal
Children’s Hospitals and subsequently at the Marie Infant
and St. Justine Hospitals. He had two surgeries for release of tendons
at the ankles and the knees when he was eight months and three years
We now live in the US (since July, 1989) and he
is followed at the DuPont Institute in Willmington, Delaware and
at the Children’s Hospital in Washington, DC. Since 1993,
he has been followed for a development of scoliosis. His measurements
went from 29deg. deflection in January, 1994 to 61deg. deflection
in January, 1995. In February, 1995, he had an MRI of the spine
and it was discovered that he had a tethered spinal cord. We made
the decision to have only the untethering done first and wait one
year for the eventual scoliosis surgery. His measurements after
the untethering surgery that he had at the Children’s Hospital
in DC, in April, 1995, went down to 41deg. deflection. Now his latest
measurements are between 49deg. and 53deg. depending on who reads
them. His recovery was so impressive that the Children’s Hospital
has put him (since September, 1995) on a program of electro-stimulation
at night to help build those muscles on his legs which never developed.
The results are incredible. He now runs on a treadmill with 11deg.-angle
at one mile-per-hour for eleven minutes. He was doing forty seconds
before the surgery. You can now feel some calf muscles. He can move
his feet and toes slightly, something he was unable to do before
My recommendations: In the event that you have
a young child with limited atypical arthrogryposis try to have him
evaluated with an MRI of the spine. Do not wait eleven years because
the muscles will atrophy. If scoliosis starts to develop, the MRI
is even more recommended. Do not rush on the surgery for the scoliosis.
If the child has tethered cord have the untethering surgery first
and try to wait for the scoliosis surgery. If any body is interested
in the electro-stimulation at night, please contact Doctor Karen
Pape in Toronto at (416) 733-1783. Dr. Pape has been working and
developing the technique and training more then 200 doctors in the
My questions: Does anybody who has experienced
a similar situation have any recommendations? Also, we are now very
confused by the different opinions received by highly qualified
specialists regarding the scoliosis surgery. Some recommend immediate
surgery, others recommend to wait the longest possible time to help
the child in his normal growth. Any suggestions out there?
Our second son Simon was born nine weeks ago with
AMC. We are still a bit under shock but the load of things to arrange
keeps us busy currently. What frightens us most at the moment are
his severe breathing problems. Many times he has gotten blue in
his face already and we really feared to loose him. It has slightly
improved meanwhile but when he has to cry his breathing still becomes
We are just now about to change our physiotherapy
from Bobath to Vojta method (suppose these are the common ones in
the US too?) and wonder if there are cases where the breathing was
improved by Vojta- therapy as well?
In principle we are very happy about Simon’s
advances in movement and flexibility and we are really confident
that he’ll be able to live a happy life.
One thing we can report back from our German self-
help group (Interessengemeinschaft Arthrogrypose - IGA) is related
to Diane’s previous mail. In the IGA they have some adult
AMC- affected persons. They say that now where they are “older”
they have to do their physiotherapy training very regularly as their
physical condition deteriorates faster than it does with ’normal’
people. But practicing every day allows them to keep their condition
at the same level.
I am twenty-nine years old and live in New York.
I’ve been very fortunate in my twenty-nine years in that I
had some of the best doctors who stopped at nothing in trying to
give me maximum function of my hands, feet, and legs through corrective
surgery. The only thing I never had was someone to talk with who
was going through the same things. Although I’ve gone as far
as I can in terms of corrective surgeries, it’s never too
late to find someone who has experienced the same things. It’s
still kind of strange for me to think I am writing to a support
group for arthrogryposis when so few have even heard of it, including
many health professionals.
I am interested in getting in touch with other
people from New York who have arthrogryposis. I’d also be
interested in hearing from anyone who has undergone total hip replacement,
specifically anyone whose hips are dislocated and has also had scoliosis
Hello. I have some information to share since
the last time I wrote AVENUES. I have received a large amount of
phone calls and mail regarding a “dressing stand” I
wrote about which I saw at the Arthrogryposis Clinic we attended
at Seattle’s Children’s Hospital last January. I referred
people to the OT there who had it in her therapy room, but many
of you reported to me you never got any response.
I now have a photo and dimensions of this “dressing
stand” which is very simply designed. It is a simple device
with a rectangular piece of plywood base 2 1/2’ X 3’
that aids in dressing and is wheelchair accessible.
Anyone interested in it may write me and please
include a stamped, self- addressed envelope and I will send you
the directions and a picture.
Recently, my daughter received a totally new type
of hand day- splint at age three. It is designed by an OT here in
Washington. Her name is Nancy Hylton and she works at Children’s
Therapy Center in Kent (206-854- 5660). They are made of a new material
called polypropylene, a very flexible, light weight material that
allows freedom of movement to her fingers and wrist but the material
does not become misshapen and will snap into correct position while
the fingers and wrist are not working. Nancy did a complete arm
casting which enables her to remake and adjust new splints for Josepha
without her being there. From the mold, the splints were made through
Cascade Orthotics, also in Kent, WA. I have photo’s taken
by my daughter’s OT of her in the splints from different angles,
and also her using her hands with them. Anyone who may be interested
in these, do not hesitate to call Nancy or myself, or send me a
stamped, self- addressed envelope and I will mail you copy of the
pictures of the splints on Josepha.
Josepha, now age three, is doing wonderful. She
underwent the school district testing for evaluation into the developmental
pre- school and tested 99% in fine motor and 95% in large motor.
She didn’t qualify, but my husband and I knew that she needed
the program because the pre- school is the “place” forchallenged
children to learn adaptive measures to prepare them for kindergarten.
We disputed with the school board over our belief that any standardized
testing cannot possibly include every individual and their type
of learning disability or need. They agreed to pay for another evaluation
by a private OT. In the meantime, we enrolled Josepha in the developmental
pre- school program, as an integrated child, taking a second job
to pay the $200 monthly tuition fee. The results of the second evaluation,
strongly recommended the pre- school for Josepha stating that it
is the proper place for her to get the proper attention in learning
adaptive measures prior to entering school. This was one of those
situations where we parents need to advocate in our child’s
best interest. Standardized testing is just not a cut- all for all.
We hope that if enough people come forward and do the same, the
schools will change their methods of only one type of testing, and
begin to meet the needs of all children. Josepha has been accepted
into the program as it should have been all along, and for this,
we are happy.
and Sean Stuart
4 Spruce Street
Rochester, NH 03867
We are the parents of a five-year-old little girl
who has arthrogryposis, specifically:
- Dysmorphic features
- malformed ears
- facial asymmetry
- different genitalia
- very dry skin, seems taught
- developmental delays
- short neck
wrist, hand, hip, ankle and foot contractures
(her fingers bend well at the first knuckle, but the next two
Her doctors will not say she is mentally retarded, in my heart
I know she is. This makes it hard to deal with because we are
increasingly disappointed with her slow rate of development.
When she was almost four, she was diagnosed with a seizure disorder.
It made perfect sense to me that there was indeed something wrong
with her neurologically. You see, since she was about eighteen
months old, she had been having severe temper tantrums. I called
them “crying fits.” My opinion was that there was
something wrong with her, preventing her from handling strong
emotions constructively. Many times the crying fits seemed not
to have been provoked by anything at all. Her pediatrician and
others assured me this was normal toddler behavior, but I knew
better. All along, all the doctors stressed to us that there was
nothing wrong outside the contractures, physical therapy would
help her overcome the developmental delays, thereby catching up.
It’s a different story now.
Elyssa Rae is a beautiful, delightful, resilient girl. I need
help, advice, information, from other parents or people who actually
have this condition. I feel so alone and emotionally exhausted.
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From the Medical Professionals
Children’s Hospital and Medical Center
P. O. Box C5371
4800 Sand Point Way NE
Seattle, WA 98105
Could you please add my name to your list of occupational
therapists interested in arthrogryposis? Dawn Chaplin is no longer
I am very interested in all aspects of arthrogryposis,
especially splinting, adaptive clothing / equipment, and upper extremity
surgeries. Surgeries include tendon lengthening, muscle transfer,
Northwoods Elementary School
3600 Northwoods Lane
Eau Claire, WI 54703
I am writing to you on behalf of a student of
mine who has arthrogryposis. He currently attends kindergarten with
supportive physical therapy which I provide. Over the last eight
months, we tried and attempted to get funded (through insurance
and then medical assistance) for a Permobile power wheelchair. The
Permobile product is very specialized. It allows independent power
mobility plus the seat lowers to nine inches from the floor (he
could safely and independently get in and out) and it elevates (similar
to a barber’s chair) to allow access to appropriate table
heights, light switches, counters, shelves, etc. Unfortunately,
funding sources do not see the lowering/elevating seat as medically
necessary and have denied payment for this option.
I am convinced that the Permobile is appropriate and necessary for
this young boy to function independently in his environment. Therefore,
I plan to re-submit the Permobile request to medical assistance
with further documentation for its necessity. In order to solidly
justify the Permobile, I am interested in learning about any information
on arthrogryposis and growth, arthrogryposis and powered mobility,
potential to gain antigravity upper extremity muscle strength/movement
via muscle transfers, etc. Any information you might have would
be very helpful.
Southern Illinois University School of Medicine
P.O. Box 19230
Springfield, IL 62794-1614
I am a clinical geneticist who has recently started
work at Southern Illinois University School of Medicine in Springfield,
Illinois. I have a patient, aged two years, who has multiple pterygium
syndrome (Escobar syndrome). I am unable to locate a support group
for this syndrome. I would welcome any information from your members
on any kind of help that is available for parents of these special
children. I would also be interested in hearing if there are any
individuals in your organization who carry the diagnosis of multiple
pterygium syndrome who live in the Illinois/Missouri area.
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From AMC Support
Asociacion Española de Artrogriposis
Apartado correos 124
E- 29630 Benalmadena (Malaga)
Hello! We are a new Spanish association located
in Malaga (South of Spain). You will understand quickly that we
associate those people who have children with arthrogryposis multiplex
congenita, doctors interested on it and some other people who support
We should like to collaborate with your association
and with all those that are working in the same direction. Our Internet
address is http://www.vnet.es/artrogriposis.
Let us know how we could work together.
Mid-Atlantic Arthrogryposis Support and Information
Just wanted to let you know that we are finally
on-line. So, if there are any questions for our group, please feel
free to pass them on to us.
It has always been one of my dreams to start a
mentor program so that children growing up with AMC would always
have someone to look up to and turn to for advice. We started the
program this month and are still getting organized. We do, however,
have a need for more AMC adults to be mentors. If you, or anyone
you might know, might be interested in being an AMC Mentor, or you
might know of a child and family that might like to have a mentor,
please e- mail me and put “AMC Mentor Program” in the
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AAA Guide For Disabled Drivers
American Automobile Association publishes a free guide which lists
places provide driving adaptations for the disabled.
Charitable Air Medical Transport System
Multiple sources of charitable air medical transportation are now
available to almost anybody in the U.S. There is no guarantee that
every need will be met, but there are dedicated people working to
help meet every need.
There are two national charitable programs that
should be known by every medical organization, every health care
worker and every family with a rare disorder patient. These are:
The National Patient Air Transport
The National Patient Air Transport HOTLINE (NPATH) at 1-800-296-1217.
This one-of-a-kind unique hotline makes referrals to all known appropriate
charitable, charitably-assisted and special patient discount commercial
service based on an evaluation of the patient’s medical condition,
type of transport required and departure/destination locations.
Patient referrals are made to over 45 different sources of air medical
The “special lift” air medical transport
program operated in conjunction with the NPATH HOTLINE. Sponsors
of large-scale disease research or experimental treatment programs
can take advantage of this program which will manage and coordinate
the air medical transportation aspect of the special project arranging
to move large numbers of patients to and from special research or
treatment facilities, one at a time, as required—via charitable
Parents of Children with Special Needs:
How to cope with the present and prepare for the future
Parents of children with disabilities and special needs often have
many serious concerns about how to best provide for the future well-being
of their loved ones. Estate Planning: wills, trusts, guardianship
choices, funding options (insurance, annuities, mutual funds). Medical
insurance problem solving. Parent support groups and advocacy organizations.
Do not let your children lose current or future eligibility for
state and federal funds because of improper or non-existent estate
planning. Do not let yourselves become insurance poor due to misinformation
about life insurance and trust funding.
If you or someone you know wishes to have further
information on any of the above subjects or wishes to schedule a
seminar for their organization, please contact Nadine or Doug Vogel
“As professionals and volunteers working
with children who have a wide range of physical and developmental
challenges, we welcome calls or letters from other families who
wish to ask for information or friendly support. As parents of a
beautiful little girl who has many special needs, we truly understand
how overwhelmed families may feel.”
Doug and Nadine Vogel
P.O. Box 641966
Los Angeles, California 90064
Phone/Fax (310) 470-0796
International Children Awaiting Adoption
There are many international children awaiting adoption by special
families, those who have experience and knowledge about difficult
medical conditions or emotional issues. These children wait in countries
where special facilities and families are many times unavailable.
Children’s Home Society of Minnesota has a Waiting International
Children Program geared specifically to finding the right families
for these children. Examples of the types of children are: Children
who have psychomotor delay, language delay or who are hypo- or hyper-tonic.
Children with club feet, crossed eyes, missing or shortened limbs,
cleft lips/palates, heart conditions, etc. Children of all ages
with diagnoses such as: Downs Syndrome, Prune Belly Syndrome, Cerebral
Palsy, Apert Syndrome, Dwarfism, vision impairments and deafness.Healthy
children 4–13 years of age. Some have suffered past abuse.
If you’d like specific information on these
children or have any questions please contact Norina Giri at Children’s
Home Society of Minnesota located at 2230 Como Ave., St. Paul, MN
55108, 612-646-4414 ext. 209. There are brochures available detailing
the requirements adoptive families are expected to meet for each
country with Waiting Children.
New Book Helps Disabled Find Computer
People with disabilities often find they can reach out to the world
and be more productive in their personal and/or work lives if they
use a computer.
Now a new book, Computer Resources for the Disabled,
lists sources that will help when acquiring, financing, funding
and using computers. In addition, it covers grants, programs, services,
technology-related assistance, where to purchase computers at a
discount, and information about companies that produce special computer-related
Many other computer resources for the disabled
are also included: books, newsletters, directories, health-related
BBSs, free BBSs, 800# BBSs, and major, hard-to-find health-related
Internet and World Wide Web sites.
It was written by Helen Hecker, R.N., author of
many books for the disabled, including the Directory of Health,
Medical and Disability Sites on the World Wide Web and Internet,
and founder of the Disability Bookshop Catalog and the Disability
News You Can Use newsletter. Computer Resources for the Disabled
can be ordered for $19.95, (or for the blind or visually impaired,
$19.95 on audio cassette), plus $3.50 shipping, from Twin Peaks
Press, P.O. Box 129, Vancouver, WA 98666-0129. For more information
call 360- 694-2462. For credit card orders only call 800-637-2256.
Or Fax 360-696-3210 or e-mail: firstname.lastname@example.org or visit
on the World wide web at: http://www.netm.com/mall/infoprod/
The Sunshine Foundation is a nonprofit children’s charity
that grants dreams and wishes to terminally ill, chronically ill,
and physically impaired children. Contact Debi Krebs at:
P.O. Box 255
Loughman, FL 33858
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