vol. XVIII, no.2, November, 1997
With the growth of the Internet, more and more
people are finding immediate help through on-line chats, "list
servers" and bulletin boards. In this environment, there appears
to be less need for publishing a newsletter that comes out only
twice a year. This has been reflected in the drop-off that we have
seen in donations in the last several years, making it increasingly
difficult to mail out copies to everyone on our mailing list (nearly
We propose to continue to publish your letters,
pictures, etc. on our Internet web site on a monthly basis (or possibly
more frequently if the letters come in electronic form). We will
continue to compile the newsletter twice a year using the material
placed on the Internet and place a copy on the web site. But we
will only mail a copy to those who specifically request one. In
this way, we hope to decrease the time it takes to get responses
to your letters, and also to reduce mailing expenses.
So if you would like to continue to receive a
copy of the newsletter by regular US mail, please write and let
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Home Sought for
Child with Arthrogryposis
Catholic Charities of Baltimore is recruiting
families interested in adopting a child from Korea who has been
diagnosed with arthrogryposis. Eun Suk is a 7-month-old (11-26-96)
male Korean infant who has been diagnosed with AMC He has multiple
contractures of the wrists, knees, and feet, and extensions of the
elbow and ankle joints. The Holt Children's Services pediatrician
notes that his personal-social-language development is age-appropriate.
We will have more physical and developmental information about this
child in July, following his evaluation by a child developmental
specialist from one of Maryland's Parent, Infant and Toddler Programs.
Interested parents may contact Ellen Warnock or
Mary Ellen Bean at: Catholic Charities of Baltimore, 19 W. Franklin
Street, Baltimore, Md., 21201, 410-659-4050. Prospective applicants
must be married couples between the ages of 25 and 49, married at
least three years, with no more than five other children in the
home. Travel to Korea is not required.
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Seattle AMC Clinic
Sapp, BSN CRRN, Nurse Clinician
Arthrogryposis Clinic at Children's Hospital
and Medical Center,
1998 clinic dates are planned for January 28,
April 29, June 24 and September 30. The clinic includes specialists
in Rehabilitation: physiatrists, occupational, physical and speech
therapists, psychologists, dieticians and nurses; specialists in
upper extremity, lower extremity and spine management; and genetics.
Visits with other specialists within Children's Hospital and Medical
Center can also be arranged depending upon your child's needs. During
the clinic day, a room is reserved from 12:00- 1:00 where parents
and kids can bring their lunch and meet with other families. Families
should plan to stay 1- 5 days depending on their individualized
appointment plan. For further information about the clinic or to
set up an appointment(s), please contact Shannon Coleman, PCC at
(206) 526- 2180 or Lyn Sapp, RN at (206) 528- 2644.
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New Book on
Eric and I just learned about a book on arthrogryposis
from Cambridge University Press. It's called "Arthrogryposis:
A Text Atlas" Editors: Lynn T. Staheli, Judith G. Hall, Kenneth
M. Jaffe, and Diane O. Paholke, (Diane is parent from Redmond WA).
The following is the description of the book:
"The term arthrogryposis describes a range
of congenital contractures that lead to childhood deformities.
It encompasses a number of syndromes and sporadic deformities
that are rare individually but collectively are not uncommon.
The aim of this book is to provide health care professionals,
individuals affected with arthrogryposis, and their families with
a helpful guide to better understand the condition and its therapy.
With this goal in mind, the editors have taken great care to ensure
that the presentation of complex clinical is at once scientifically
accurate, patient oriented, and accessible to readers without
a medical background."
The price is $80.00. To order, call 800- 872-
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Child with AMC Awaits
I just wanted to ask you if you could include
information about a child waiting to be adopted who happens to have
AMC, in the next Avenues newsletter? He is listed in the current
WACAP waiting child book. If so, Kim Wilson (e- mail: email@example.com,
FAX: (206) 575- 4148, Phone: (206) 575- 4550) of WACAP can give
you a description and photo. He is child #58, Augustin , born August,
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of AMC Pamphlet
Thanks to the efforts of Antonio Rodriguez- Laiz,
coordinator of the Spanish Support Group for AMC (Asociacion Española
de Artrogriposis, e-mail: firstname.lastname@example.org,
artrogriposis) we now have a copy of the AVENUES pamphlet on
AMC translated into Spanish. We will be placing it on our web site
soon. Thank you Antonio!
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The National Library of Medicine has opened their
MedLine database of 9 million medical abstracts to searches over
the Internet. To access the database, point your browser to: http://www.ncbi.nlm.nih.gov/
[back to top]
National Rehabilitation Information
800/346- 2742, ext. 15
Information for Independence
The National Rehabilitation Information Center,
a trusted information resource for 20 years, has maintained a web
presence for several years. Now our site provides keyword- searchable
access to five databases that together include 60,000 records. You
can search: REHABDATA, with over 51,000 articles, books, videos
and other resources spanning over 40 years of disability and rehabilitation
research, - The NIDRR Program Directory and Compendium, for the
latest in federally funded disability and rehabilitation research,
and - The NARIC Knowledgebase, which describes more than 1,400 organizations,
400 journals and magazines, and 700 "content deep" Internet
sites and discussion groups. We have endeavored to make it as accessible
as possible to all browsers and abilities. Please visit our page
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for Persons with Disabilities
Tittle, M. D., Mariposa Ministry
For those of you with Internet access, we have
been upgrading and expanding the Mariposa website substantially
in the past two months, and have added an annotated website directory
that should help you to find items of interest with ease. Also now
recruiting persons with disabilities for an on- line "course"
in peer counseling: http://www.satcom.net/mariposa.
Contributions and feedback are welcomed (coveted).
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Publication on Assistive
512 South Harbor Drive
Telephone and Fax (817) 444-4656
For years I have wondered how I could repay all
of the help that I received from Avenues. The information and companionship
were a wonderful life line for me. Our daughter had AMC and was
a wonderful success story of achievement and triumph over all the
problems that are associated with AMC. Sadly, Becky died, after
surgery five years ago.
I have worked for many years designing adaptive
equipment to assist people who have severe disabilities. Currently,
I am in the process of developing and testing an assistive feeding
device. Before the device was designed and built an exhaustive study
was conducted to see what devices were available, how they worked
and what shortcomings they had. Additionally, we examined what research
was being conducted in this area. Last year I revisited this study
to see what changes had taken place and to accumulated information
on commercially available feeding devices. I did not include information
on adaptive feeding equipment such as built up utensils, special
bowls, etc., as there seems to be an abundant supply of information
in most health care catalogues on this equipment. The enclosed document
is the compilation of my findings. I thought that it might have
some value to people with AMC who cannot eat independently. Please
feel free to distribute copies if they would be of help to anyone
(no charge). My company has to charge $5 to cover copying and postage
but if anyone wants to pay I would be happy to forward a copy. [Editor's
note: The Survey of Assistive Feeders, published in June, 1996,
is 43 pages and is well illustrated with pictures and diagrams of
many different feeders, both commercial models and those in the
research stage. Please contact the author if you would like a copy].
When the device my company is developing is available
I will let you know. I am sure that it would be accessible to consumers
Once again, thank you for the years of help.
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AMC Chat Sessions
John Sneddon hosts an AMC chat session each Sunday
evening at 8 p.m. eastern time on the Internet. The chats are on
the IRC server: support- group.com and the channel is: #amc. To
get instructions on how to join the on-line chat, access the web
page at : http://members.aol.com/xetro/amchat.htm.
Topics can be found on the AMC bulletin board at: http://www.support-group.com/#support.
Gabrielle Hendrichs hosts a chat group on AMC that
meets on the third Monday of every month at 9 p.m. EST in the private
room AVENUES on America On-Line. To get details, access the web
page at: http://members.aol.com/GabyH/AMC.html.
Carly Matthews (email@example.com)
hosts chat sessions on the first Wednesday at 6 p.m. PDT (9 EDT)
on #Disabled on NewNet IRC. Topics and participants are not limited
to those with AMC. For more information on how to join, access the
#Disabled Channel Services web site: http://members.tripod.com/~disabled/.
Carly's web site is: http://members.aol.com/MMatth1228/.
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From Families Around
P.O. Box 1334
Mcallen, TX 78502
I would like to know if any organization can help
my baby with some educational toys. We are a very low income family
and we have medical expenses. I have private Insurance and I'm treating
my baby in San Antonio, Texas. He already had clubfoot surgery,
but he is very weak in his lower extremities. The doctor said he
does not have enough quality of muscles; maybe he will need surgery
on his knees next year. What do you know about muscle transplants?
Who are the best doctors treating arthrogryposis?
64A Green St.
My name is Kellin and My husband's is Mark. We
have twin girls that are 14 months, Kirsty and Ellie. Ellie has
arthrogryposis. She has both hip joints. Her right knee and both
feet are affected. Her sister was not affected. Ellie ruptured her
membranes at 26-1/2 weeks. I sat in the hospital for 10 weeks before
they arrived. At first, they thought she was squashed but an orthopaedic
surgeon (Mr. Jack O'Conner) later diagnosed her with arthrogryposis.
Ellie has had her ta in a plaster from birth.
(it is now in a splint). At age 6 months, Ellie had her knee operated
on as well as the tendon released on the back of her ta. At age
8 months she has had her ta further released. At 11 months she had
her first hip done followed by her second 2 weeks later, entailing
a very long 14 weeks in a broomstick plaster. Ellie is now in an
The reason I am writing you is that I come from
Western Australia. As our population is small, arthrogryposis is
very rare and there is not very much information available. My nephew
found you on the Internet. There are so many things I want to ask
I have heard that one of there theories
is that the pregnant woman comes in contact with polio. At the
time I was pregnant, I worked with geriatrics many of whom were
post-polio victims. I know this sounds far-fetched, but is there
any relationship between the two?
Is there ongoing arthrogryposis research?
Are there any further developments?
Will Ellie suffer from arthritis at an early
How will Ellie's mobility be affected?
How are adult sufferers now coping and dealing
with life? What is their prognosis?
If we have further children, will they get
it, or will Ellie's children get it?
Have you had other twins affected by this?
If I have another set of twins (the chances
are high) will the chances of arthrogryposis happening again
be increased? Or does having a twin have nothing to do with
it? Our surgeon is the best Perth has to offer and arthrogryposis
is one of his specialties, but he is not very forthcoming with
information. He gives us small insights at a time. No matter
how bad or devastating the new is, we have to face it because
there is nothing we can do about it. Ellie has arthrogryposis.
So Mark and I are hoping that you can offer some information
or at least support to assure us that our daughter is not the
only one in the world to suffer from this.
26835 CR 44A
Eustis, FL 32736
We have a beautiful baby daughter who is truly
a miracle whose name is Christiana. She is 11-1/2 months old and
a whole 15-1/2 lbs. She was born at 5 lbs. 15 oz. with the left
hand contracted in, right leg dislocated at knee and hyper-extended
and club foot on left foot. We immediately casted for a series of
approx. 8-10 weeks. She corrected- both leg and foot. But because
I did not have correct shoes to put on her she went back. Christiana's
condition was caused due to my having a double-chambered uterus.
I had 2 boys prior but they must have been on the larger side.
She's had eating problems, due to muscles in face,
but through speech therapy and growth have outgrown the problems.
She didn't move arms very much at birth but is progressing day by
day. On her back on the floor she is able to extend her arms to
her head. She is able to manipulate toys with her hands and has
a small amount of grasp in her hand. She is seen by PT/OT and Speech
one time a week for 30 min. I do it each day with her.
They did DNA test when she was about 5 weeks and
came back normal. She is very shy and this has hindered her with
doctors. They don't believe she can do things. She as a problem
with congestion but as she gets older, she handles it.
We got rid of suction machine at 4 months. She
is not talking as much as my others but I have faith she will. She
seems to be very bright as to exercises I teach her. She remembers
and does them in play. At 5 weeks, the doctors wanted her to get
a G-tube. I felt she was like a flower blooming and she proved me
right. However, I agreed to an NG tube for 8 weeks which I changed
each week. When she was 4 months the doctor said to pull it. I did
and she ate baby food. She is not on any medications. She has been
in past on herbs and vitamins.
It's been a long haul. Now finally, I reach my
question. The doctor wants to do surgery on the club foot. I am
against them putting her under--due to congestion and size. I would
like to do another series of casting...would you have any information
on casting for club feet...This last year has been very difficult
and I've never had to fight doctors like this before. But I'm going
to do the best I can for her. I feel very strongly that she isn't
to have surgery now...
and Jennie Briggs
125 Homedale Way
Las Vegas, NV 89107
We would first like to thank all of the families
who have written in and told their stories, questions, and answers.
It really helped us through the tough times in the beginning. Our
daughter Ashley was born on September 13, 1995. She has arthrogryposis
multiplex congenita. She was born with one club foot and her arms
and hands were the most severe. Living in Las Vegas we found that
the doctors were not that familiar with AMC, so we took her to Shriner's
Hospital in L.A. They did surgery on her foot at six months old
and we take her for therapy in Las Vegas for the arms and hands.
Ashley's arms are straight for the most part and her wrists are
contracted. She tries to feed herself with a spoon, but it's very
hard for her to get the food in her mouth. We don't know if she
will ever have to have surgery on her arms or hands. She is 16 1/2
months old and still isn't quite ready to walk Ashley is pretty
small for her age and her therapists and pediatrician are a little
concerned with her growth. She eats good so I don't know or understand
why she isn't gaining and growing like she should be. I was just
wondering if any of you out there know if this could be caused by
the AMC and if these children usually or if at all have short stature.
I have always thought that she was just a little petite, so if you
have any answers please let me know. Thanks again.
4311 Cardinal Ct.
Casper, WY 82604
Update on Dan Cuger, AMC, age 37: Dan has had
13 years as a data entry clerk with BLM, Dept. of Interior in Casper,
Wyoming. He punches the computer with a dowel rod with an erasure
at the end. He is on the Internet at work : DCreger@wy.blm.gov He
is again looking for a caretaker and a place to live as his last
caretaker didn't help Dan pay his bills but paid himself a healthy
amount. Dan is filing bankruptcy and losing his condo and vehicle.
He has not had any financial help for 13 years. Does anyone know
if he qualifies for MDA or Developmental Disabilities? He just got
a new electric wheelchair and his insurance paid 75%; Dan paid 25%.
Wyoming does not have a law exempting wheelchairs or medical appliances
in a bankruptcy. We hope to get one passed next year but it's too
late for Dan this year. He has a cheerful attitude and enjoys his
work, but says it's too bad he has to be punished (financially)
for working - meaning 9/10 of his salary goes to care. P.S. Dan
says he would move to a community that has a handicapped care facility
and an opening for him in a BLM office.
& JoAnn DuBois
P.O. Box 92
Sharon, CT 06069-0092
We just wanted to say thank you once again for
the support and information that your newsletter provides. It is
so very nice to have this type of communication as this is such
a rare condition and it is very hard to find up-to-date information
Our son, Jesse, born 8/24/91, has arthrogryposis
only of the upper extremities. He is a very determined and happy
boy who has adapted very well to his disability. He is presently
in kindergarten and has physical and occupational therapy support
and he has been working on a computer at school as this will most
likely be his writing tool in the future. He still does, however,
have much difficulty with dressing and toileting himself and this
is of great concern to us as he will be going into the first grade
for a full day next year. He has had a half day of kindergarten
this year and has done very well, but has had the assistance of
his teacher and teacher's aides. We are very concerned that he will
not have this assistance as he gets older and may not want it as
it will be very difficult for him not to be independent. Jesse may
soon have a triceps to biceps transfer in the near future, which
may help him with this situation. We have also obtained many adaptive
equipment catalogs and tools, but would appreciate any ideas that
anybody would have regarding adaptive devices and/or maneuvers for
children with arthrogryposis of the upper extremities, especially
in regard to dressing, toileting, and writing. Also, we would like
to hear from anybody whose child has underwent the triceps to biceps
transfer and how they have managed with this.
c/o Nancy M. Moore
515 Whiteface Road
North Sandwich, NH 03259
My daughter, Donka, came to me from Bulgaria at
the age of six. She was diagnosed with AMC at birth, and apparently
had surgery to correct club feet while she was still very young,
as she has scars from her toes to her knees. The surgery was not
successful, and her feet remain clubbed. We saw a genetics expert
soon after she arrived, and he confirmed the AMC diagnosis, with
the comment that she had arthrogryposis of the amyoplasia type.
From reading AVENUES I know that Donka is quite lucky. While she
skillfully uses a manual wheelchair for mobility (or scoots on her
bottom at home), and has little use of her hands, her elbows and
shoulders are only minimally affected, so she is almost totally
self-sufficient. Indeed, her physical condition has never been of
serious concern to me, or kept her from doing what she wishes.
However, shortly after her arrival in my home
it became clear that Donka was not learning English with any facility.
I had to pressure the adoption agency to finally discover, eighteen
months after her arrival, that Donka had never spoken Bulgarian,
either. Eventually she received a diagnosis of Central Auditory
Processing Disorder, a type of learning disability that affects
her receptive and active language use/comprehension. In addition
she is years behind in reading, math and social skills, despite
testing out in the normal range for intelligence.
Recently our developmental pediatrician recommended an MRI of Donka's
brain, since she had read about some individuals with arthrogryposis
who have brain damage - and, indeed, had already found this type
of brain damage (migration abnormalities) in the one child with
arthrogryposis in her case load whom has had an MRI. The preliminary
results of Donka's MRI show quite a different story. Her left hemisphere
is smaller than the right', her ventricles are enlarged (with no
signs of hydrocephalus); while her gray matter (outer cortex) appears
of normal thickness, her white matter (inner cortex) is much reduced;
her septum pellucidum is partially missing, and her corpus callosum
is thinned posteriorly.
What does all this mean? Beats me at the moment.
In several years of reading AVENUES I have never seen another report
on a brain MRI, either from families or professionals. Our doctor
doesn't know what to tell us, and is deep in research of her own
to see if there are any reports of other people with arthrogryposis
and this type of congenital brain abnormalities. Has anyone in the
AVENUES extended family run across anything similar? I would appreciate
hearing from anyone who can help me.
and Lucille Ford
1021 Woodmont. Blvd.
Nashville, TN. 37204
We really enjoyed reading the several letters
in the most recent issue of Avenues from young adults. Looking back
over the past almost ten years of Avenues causes us to be aware
of the commendable service that you both have provided. We know
that many families have benefited. And we thank you for your time
Out Paul is now a young adult, doing well in his
job with the state of Tennessee and being involved in activities
concerning the disabled. As you may recall, he is a quadriplegic
but with his motorized wheelchair and state of the art modified
van, he is always on the go. Presently, Paul is active in the following
- President; ADAPT of Tenn. (American Disabled for Attendant
- Board member: Access Services of Middle, Tn.
- Board member: Community Shares
- Board member: Matthew W. Butler Foundation.
- Member: Senator Bill Friest (R) of Tenn. Disability advisory
Paul would like for us to furnish his home, fax, and e-mail address
for anyone that would like to correspond with him:
1021 Woodmont Blvd.
Nashville, TN 37204-3235
Lucille and I are now in our 70's and have slowed
down, but would like to continue hearing from any of your correspondents.
and Stephanie Bartlett Ginsberg
356 Idaho Street
Ashland, OR 97520
(541) 482- 3913
Thank you so much for printing the photos and
information about the two Brazilian orphans with arthrogryposis.
Thanks in part to AVENUES, we are happy to report that one of the
children, the three-year-old girl named Tami, is now at home with
a family in the US, receiving all the love, attention, and medical
treatment she needs! And within days of receiving the January, 1997,
issue of AVENUES with the photo of Claudio, a six-year-old boy,
we received a phone call from an interested family. More information
has been sent to the family, and we have high hopes that Claudio
will be with a new family in the US very soon.
Now an update on our son, Emmanoel Morgan Ginsberg,
born 8-28-91 in Brazil: At almost 6 years of age, Morgan no longer
uses his crutches, relying instead on his anterior floor-reaction
AFO's alone to aid in walking. His hands and arms continue unaffected
by AMC. So far we ve seen no signs of scoliosis, and our toileting
concerns resolved themselves without any effort on our part. Despite
some early developmental delays from 7 months in an orphanage, and
even though his late August birthday makes him one of the youngest
in his class, he did very well in kindergarten and his teachers
feel he is more than ready for first grade in September. With physical
support from his teacher, he even ice skated this winter! And he's
gone horseback riding twice recently and really loves it!
Thanks again for all the information and hope
you give AMC families. Keep up the good work!
[Editor's note: This is the Easley's story of
their adoption of a Russian child with arthrogryposis]
Taylor, Timothy and I arrived in Moscow on March
30th, then flew to Rostov and stayed with Natasha and Victor, a
Russian couple who welcomed us into their home. They lived only
3 blocks from the orphanage. We were put in touch with Natasha and
Victor through some American missionaries in Rostov.
We saw Noah for the first time on March 31. We
talked to him (through an interpreter) and played for about an hour
that day. We got to see him for about an hour every day for the
next few days. After a lot of paperwork and a 10-day waiting period,
we left Rostov with our new family member, and went to Moscow to
the US Embassy to finalize Noah's immigrant visa. We spent the weekend
in Moscow sight-seeing, since there were no seats available on the
Lufthansa flights to Frankfurt. Noah had his first McDonald's meal
and seemed to enjoy it! Good thing!
After a rather tiring transatlantic flight with
an exuberant six year old, we arrived at the Memphis airport to
a welcoming crowd. It was good to see a lot of friends and some
relatives and it made for a great end to a long trip.
Our first week home has been a good and interesting
adjustment--the English-speakers are learning a few words of Russian
and the Russian speaker is hearing and learning a lot of English
already. He's a great mimic and can repeat any word that we ask
We've already been to the doctor, and Noah will
soon be getting surgery to correct his club feet. He is a very energetic
and friendly little boy, and has a lot of self-motivation. The prognosis
for his future (medically) is excellent. He will most likely be
able to walk after surgery and casting for several months.
Please pray that Noah continues to make a good
adjustment to his new family. We love having him here and hope the
feeling is mutual! Thank you all for your prayers of support along
the way. We truly appreciate all of our friends and family.
24 Newcomb Drive
Browns Mills NY 08015
Valerie was 4-1/2. I can't deal with her death.
She had arthrogryposis but not severe contractures. I don't want
to get into her medical problems too much. She had a trache and
feeding tube. They said she wouldn't live past 6 months. I devoted
my life to her care. She died June 22, 1996. One year ago. I can't
write too much now. I feel too much pain. Please write to me if
your child passed away. I need support or help or someone who can
relate to how I feel. Please write me. Please don't put it off.
4738 C.R. 119
Hesperus, CO 81326
I'm a sixteen-year-old girl in my junior year
of high school. I have arthrogryposis. I have been through many
operations, but still know very little about my disability. I would
like to hear from someone else [about] what I may expect in the
I have had occupational therapy through the school
for two years and my therapist taught me how to work and use a computer
with one hand.
Please, can you help me with some information.
I would like to go to college and I would like to work in the medical
field. Do you know anyone who has done either of those things? Are
there scholarships available?
and Andrea Langner
24 Botsford Avenue
Milford, CT 06460
A few years age, I wrote to you about our daughter,
Rebekah, who was born with arthrogryposis in 1991. Rebekah is affected
with arthrogryposis in her upper and lower extremities. She has
very minimal use of her hands and arms due to: lack of muscles,
contractures, and nerve damage. Her lower extremities are basically
affected with contractures in her knees and ankles. At one year
of age, she had club-foot surgery, which was a success. Rebekah
was never supposed to have use of her upper extremities or ever
At age three, she began walking and hasn't stopped.
Although she has limited use of her upper extremities, she is able
to feed, wash herself, play Ninetendo, do her homework, write, draw,
dial a phone, etc. with either her hands, mouth, or feet. She is
triply blessed. The only information we desire to find is maybe
any adaptive equipment to help assist her in the toileting area.
Rebekah goes to kindergarten and is in a regular
class. All her classmates, friends, and people around her accept
her for who she is. The secret is never lying, but being open to
everyone about your child's disability. If your child can't do something,
or does it differently than others, big deal! Your child is a gift
from God. Don't question why your child has a disability. Live with
it, deal with it, and your child will most likely pull you through
it. It's really the (our) children who pull us through tough times.
God bless you all.
6220 Ackel St. #557
Metairie, LA 70003
First of all, I'd like to let everyone know that
I've changed my address (see above listing). Secondly, I'm hoping
for your help in a research project that I've been considering lately.
For those of you with children who have yet to
attend school, how much thought have put in regards to your son
or daughter's education? For those who have children already in
school, what unforeseen expenses have you encountered that deal
with your child's education? In essence, what expenses have you
had to work in order to properly educate your son or daughter? How
are you meeting these expenses? Are you receiving any federal, state
or local government funding, or any other type of grants? Answers
to these questions may further strengthen my research.
I am investigating the need for a non-profit organization
that would supply educational grants to those with arthrogryposis.
Should my research prove that this need exists, then I expect to
pursue establishing such an organization.
Currently, I have no time frame for this project.
Setting up a timely plan depends on your response.
For those of you wondering about my reasons for
this idea, allow me to explain. I'm 35 years old and was born with
arthrogryposis. I graduated from high school with a 3.6 grade point
average and earned a BA in Communications from the University of
New Orleans with a 3.0 gpa. I did some post-graduate work, but didn't
finish my masters. I'm currently working toward a teacher's certificate
in secondary English and should be finished next year. As the cliché
goes, "no one can take your education away from you."
Little is more important than being educated. Pursue it with vigor.
Please write your responses so that I may begin
a file, and if you wish to call, feel free to do so at my home (504)
885-5187 or work (504) 283-3666.
and Kim Oliphant
5403 - 150th Pl. S.E.
Everett, WA 98208
Our daughter Nicole will be five in November of
1997. I can't believe she is growing up so quickly! The time has
truly gone by fast. I still remember today the best advice given
to me the day she was born: "You are running a Marathon not
a Relay race" so take it one precious day at a time. These
words of wisdom are still an important part of our lives today.
Now that Nicole is older, wiser and understands everything (and
more!) she will also be an important part of the decision-making
where she is concerned. We are faced with this as we speak. Nicole's
right knee/leg has gone from - 30 to - 60 degrees in two years.
This has happened even with daily range of motion and bracing. With
recent and forthcoming growth spurts the recurrence of contracture,
previously released, is preventing us from getting her into her
long leg braces for effective standing and weight bearing. Though
Nicole has an electric wheelchair our hopes that our daughter will
someday take her first steps keeps us aware of all we must do to
provide her with that chance. Her Orthopaedist at Children's Hospital
has recommended a procedure called the "Ilizarov Technique"
(what we know about this is minimal). A cage like device encases
her leg and is connected to the bone. A slow stretch (ouch!) is
done at home during a 2-3 month period We were told that this is
effective in stretching the tissue, nerve, artery and tendons. A
"release" on the other hand would not be as effective
because the nerves and artery cannot be stretched that way. We don't
know much about the success (or failure) of this technique and would
like to talk with anyone who has a child around Nicole's age that
has had this done. We realize, as with any procedure, that there
are risks such as infection and bone breakage. We hope to hear from
you...Please write or call collect.
Can you please place in the next newsletter the
fact that my e-mail has changed if correspondence is required with
me. This is also the contact e-mail for interest in the Australian
Group (TAAG) as they are not online and I will forward any requests
for information onto the Secretary via snail mail.
8444 Marionville Road
home: (613) 774-0106
work:(613) 747-7800 extension 2280
My son was diagnosed arthrogryposis multiplex
congenita I am looking for any information concerning arthrogryposis
in a more severe state.
I would like to know if anyone has ever reported
a child or children that could not swallow? Has any physical (ex:
bio-feedback) ever been done to help these children and what kind
of results they had? Have there been any surgical procedures been
done to help these children?
Any information whatsoever would be greatly appreciated.
Thank you so much.
I wanted to share with other families of AMC kids
under eighteen years of age: their eligibility to the Starlight
Foundation. They grant wishes of travel, celebrity visits, or thing
(ex. computer, trampoline, etc.). Wishes must be a "want"
not a "need." Our seventeen-year-old daughter, Mandy,
was granted a trip to Dollywood in Tennessee to see her idol, Dolly
Parton. A limo, the flight, a rental car, the hotel, money for food
and souvenirs, a camera and film development, tickets to attractions
for our whole living-at-home family, plus an amazing visit with
Dolly, was provided by Starlight. Mandy sang and cried with Dolly.
It was indeed the find of magical trip the foundation hoped it would
be. Most of us can recognize the many blessings in being or raising
kids with disabilities&emdash;but we can also admit the times
of frustration are also a part of our lives. The donations provided
to the wonderful organizations have made a difference in our lives
and I hope many of yours. The Illinois Starlight Foundation phone
number is (312) 251-7827. They can refer other numbers in your area.
M. (Shelly) Powell
1121 Second Avenue N.W.
Largo, Florida 33770-2365
...My AMC son, Jeremy, celebrated his 18th birthday
on August 13th and is now a student at the University of South Florida
majoring in Jazz Studies and Performance. He is doing absolutely
great and Is having a wonderful time as USF has a football team
for the first time in its 40 year history! He is mildly afflicted
with AMC, thankfully, but has had to struggle all his life with
even the simplest of tasks. He has done so with quiet determination
and resolve and has never asked for any favors. I am so proud of
him and humbled by him at the same time. He truly is my hero.
Let me introduce myself a little. I was born with
AMC in 1948 -- LONG before rehab knew what to do with people like
me. It affected both upper and lower extremities and my trunk, but
I became ambulatory by the age of 4 without crutches or braces.
(Of course, I fell on my head a lot, but no one seemed too concerned
about such minor matters back then.) I went to the University of
Illinois, and graduated in 1970 with a B.S. in Psychology. Then
I went to the University of Puget Sound (in Tacoma, Washington),
and got a second B.S. degree in Occupational Therapy. I worked as
an O.T. for years and years (about 25 in all, I think), mostly in
physical rehab settings. But in 1977, while I was working on my
Master's degree in Allied Medicine at Ohio State University, I had
a major setback. I developed a cervical spinal cord compression,
which was "treated" with numerous surgeries on my neck,
head, and back, and finally ended in my becoming totally quadriplegic
for awhile. (Thanks to all that surgery, I also developed hydrocephalus,
which required shunting.) I eventually regained about 80% of the
physical abilities I previously had. I am able to walk without crutches
or braces, but after that medically traumatic year, I began using
an electric wheelchair for most of my mobility, and personal care
assistants to help me with dressing, bathing, etc. Around 1980,
I started getting interested in the independent living movement,
and took a job as a Senior O.T. in the Independent Living Program
at the Roosevelt Institute for Rehabilitation in Warm Springs, Georgia.
I taught independent living skills (most of which were based on
my own personal life experience) to small groups of severely physically
disabled Georgians. It was during that job that I saw a need for
housing that people with various abilities could share and help
each other to achieve a level of independence (really, interdependence)
that they might not be able to achieve alone.
In 1988, I quit my job in Warm Springs, moved to
Columbus, Georgia, and founded a nonprofit corporation, H.I.S. House,
Inc., to establish a home that people with physical disabilities
could share. In December of 1995, we finally had enough money to
purchase a very nice, 3-bedroom ranch-style home. It has a roll-in
shower in the laundry room, wide doorways and hallway, and is open
under the sink and has a raised toilet with grab bars around it
in the "master" bathroom. This past January, we were able
to have the kitchen and laundry room remodeled to be totally wheelchair
accessible. Right now, we are having a deck built onto the back
of the house (which will be great for picnicking and sunning, and
will also make the back entrance wheelchair accessible). (The front
entrance is already accessible.) As soon as the deck is finished,
we will have a storage shed and a wheelchair accessible garden (basically,
a 20' x 30' concrete slab with raised beds or large buckets) built.
The reason I'm writing you is to see if you can
help me find 2 or 3 women who might be interested in sharing this
home with me. After we remodel the garage next January (1998), creating
another large bedroom and bathroom, there'll be space here for 1
or 2 men. I'm looking for intelligent, well-motivated people (ages
20-50) who are physically disabled. They would not necessarily need
to be wheelchair users, but this home is perfectly suited for people
in wheelchairs. Ideally, the people who live here would be interested
in helping others who are not able to live alone. It would be really
great if they were willing to establish/manage a shared residence
in the location of their choice, and we could get them started.
They could be students (there is a state university about 1 mile
from here) or could be employed at a job out in the community or
here at home. I would like to teach them all that I've learned about
setting up a nonprofit corporation, fundraising, and all the many
details about establishing a home like this. If they need and would
like to improve their functional and/or independent living skills
while they lived here, I would be glad to work with them on that,
Would it be possible to run an article about this
in your newsletter? If anyone wants more information, they can call
or write to me.
[Additional note:] I don't know if you "gathered"
this from the letter I sent you, but I am an O.T. (registered with
the American OT Assn. and licensed by the state of Georgia), and
would be happy to serve as a resource for people with whom you communicate.
I'm probably one of the older people with AMC in your support group
(I'll be 50 next January - ugh!), but that gives me the advantage
of LOTS of experience coping with it, right? AMC affected both my
upper and lower extremities, and my trunk. I use an electric wheelchair
for most of my mobility, but walk (with bilateral short leg braces)
quite a bit around the house. I have lived alone quite independently
(with attendant care) for most of my adult life. (It will be a big
change for me to have housemates, but I'm looking forward to it.)
I have developed numerous little adaptive "devices" and
techniques to help with ADL, most of them quite inexpensive and
easily made, and would be glad to share these ideas with others.
582 Bobwhite Trail
Akron, OH 44319
Jason is now 13 years old. His arthrogryposis
is the least of his problems at present. He is functioning well
within those limitations. His biggest problem is episodes where
his lips turn blue, he seems incapable of taking a breath and his
extremities flail. The doctor thinks it is a chemical imbalance
in the brain. This is probably from the brain damage ( he also has
CP) The doctor has no answer on how to test for the problem or how
to treat it. We don't want to give up that easy and would appreciate
anybody's suggestions or help. If you know of a doctor , any information
at all , we would ask you answer us as soon as you can. This problem
is affecting Jason more frequently and the intensity of the attacks
have increased. He has been doing this for the past 2- 3 years.
We had hoped we could find an easy answer, no such luck. We have
done amino acid studies and they were negative...
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From The Medical
Taral V Nagda
Department of Orthopaedics
King Edward Memorial Hospital
Parel Mumbai(Bombay) 400031
Fax 9122 4143435
I introduce myself as Lecturer in Orthopaedics
at KEM Hospital Bombay, which has one of the largest Dept of Orthopaedics
on this side of the world. I have been interested in management
of AMC since my training in Paediatric Orthopaedics at Wadia Hospital
for Children Bombay. At Paediatric Research Lab at KEM Hospital
we have Genetic Lab with biochemical and electro-diagnostic facilities.
We have India's first physiotherapy dept. I request you to put our
center as a reference center on Avenues home page for patients from
Indian Subcontinent. We are also interested in carrying out international
joint research projects on this subject.
Ann Van Heest, Assistant Professor
University of Minnesota,
Dept of Orthopedic Surgery
420 Delaware St. SE
Minneapolis, MN 55455 (612)625- 1177
Gillette Children's Specialty Healthcare
200 E. University Ave
St.Paul, MN 55101 (612)291- 3898
Shriner's Hospital for Crippled
Children- Twin Cities Unit
2025 East River Road
St. Paul, MN 55455 (612)335- 5300
I would like to be included on the list of physicians
interested in treating arthrogryposis. I am an orthopedic surgeon
from the University of Minnesota and have several research studies
available through our work at the Arthrogryposis Clinic at the Shriner's
Hospital- Twin Cities Unit.
0. Baynham, M.D
Palm Beach Orthopaedic Institute
3401 PGA Boulevard, Suite 500
Palm Beach Gardens, FL 33410
FAX: (561) 694-3099
I recently learned of your support group from
the parents of one of my patients with arthrogryposis multiplex
congenita. I am interested in having my name added to your list
of interested physicians. I am a board certified, fellowship trained
pediatric orthopaedic surgeon practicing in Palm Beach and Martin
counties of South Florida. My practice is devoted exclusively to
the care of children with musculoskeletal disorder. I have had the
opportunity to care for a number of children with both distal and
generalized arthrogryposis. Currently, I have three patients for
whom I am actively providing treatment. During my fellowship training
at the Shriner's Hospital unit in Greenville, South Carolina, I
had the honor of treating a number of children with arthrogryposis
and arthrogrypotic conditions. I hope that you will keep me informed
of your activities and allow me to be a resource for you in the
South Florida area. Thank you for your consideration and good luck
with your future endeavors.
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The National Association of Protection and Advocacy Services is
a group of non-profit agencies who act as advocates for people with
disabilities. To find out more about the services they offer, access
their web site at: http://www.protectionandadvocacy.com.
Canine Companions for Independence
CCI trains dogs to assist people with disabilities other than blindness
and has five regional facilities throughout the U.S. For more information,
contact CCI, P.O. Box 446, 2965 Dutton Avenue, Santa Rosa, CA 95402-0446.
Phone 707/577-1700; TDD 707/577-1756. Visit their web site at http://www.caninecompanions.org/.
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