newsletter: vol. XVIII, no.2, November, 1997

Contents:

Avenues Newsletter Changes

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 1000).

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 us know.

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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 Dates Set

From: Lyn Sapp, BSN CRRN, Nurse Clinician
e-mail: lsapp@chmc.org
Arthrogryposis Clinic at Children's Hospital
and Medical Center,
Seattle, Washington

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 Arthrogryposis

From: Diane Voigt, Avenues Discussion List Coordinator
e-mail: DIANE@hoffman.mgen.pitt.edu

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- 7423.

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Child with AMC Awaits Adoption

From: Suzanne Furgal
e-mail: furgalj@lakeviewtech.com

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: 74552.1710@compuserve.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, 1988.

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Spanish Version 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: antrodri@vnet.es, http://www.vnet.es/ 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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Medical Abstracts On-Line

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/ PubMed/.

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On-line Disabilities Databases

From: Dan Wendling
wendling@mindspring.com
Publications Coordinator
National Rehabilitation Information
Center (NARIC)
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 at http://www.naric.com/naric.

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Mariposa Ministry for Persons with Disabilities

From: Ken 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 Feeding Devices

From: Catherine Wyatt
Wyatt Enterprises
512 South Harbor Drive
Azle, Texas
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 with AMC.
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 (carlym@u.washington.edu) 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 the World

From: Martha Y. Ayala
P.O. Box 1334
Mcallen, TX 78502
210-621-4596

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?


From: Kellin Busher
64A Green St.
Joondama
Western Australia
6060

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 Edinburough harness.

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 you:

  1. 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?
  2. Is there ongoing arthrogryposis research? Are there any further developments?
  3. Will Ellie suffer from arthritis at an early age?
  4. How will Ellie's mobility be affected?
  5. How are adult sufferers now coping and dealing with life? What is their prognosis?
  6. If we have further children, will they get it, or will Ellie's children get it?
  7. Have you had other twins affected by this?
  8. 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.


From: Pamela Bunnell
26835 CR 44A
Eustis, FL 32736
352-589-9432

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...


From: Curt 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.


From: Carolyn Cuger
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.


From: Duane & JoAnn DuBois
P.O. Box 92
Sharon, CT 06069-0092
(860) 364-1377

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 regarding arthrogryposis.

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.


From: Luisa N. Facciola
c/o Nancy M. Moore
515 Whiteface Road
North Sandwich, NH 03259
603/284-6843

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.


From: Charles 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 and efforts.

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 organizations:

  • President; ADAPT of Tenn. (American Disabled for Attendant Programs Today)
  • 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 committee.

Paul would like for us to furnish his home, fax, and e-mail address for anyone that would like to correspond with him:

Paul Ford
1021 Woodmont Blvd.
Nashville, TN 37204-3235
Phone: 615/269-8530
Fax: 615/269-8530
E-Mail: pjfwheels@viponline.com

Lucille and I are now in our 70's and have slowed down, but would like to continue hearing from any of your correspondents.


From: Mel and Stephanie Bartlett Ginsberg
356 Idaho Street
Ashland, OR 97520
(541) 482- 3913
e-mail: stbartle@orednet.org

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!


From: Brett and Susan Easley
379 Robertson Rd. S.
Hernando, MS 38672
e-mail: 76053,1770@compuserve.com

[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 him to.

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.


From: Michelle Harvey
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.

From: Marissa Kessel
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 future.

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?


From: Keith and Andrea Langner
24 Botsford Avenue
Milford, CT 06460
(203) 876-7974

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 walk.

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.


From: Doug Moreau
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.


From: Jim and Kim Oliphant
5403 - 150th Pl. S.E.
Everett, WA 98208
(425) 379-9145

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.


From: Leanne Nugent
Australia
e-mail: mnugent@mail.wagga.net.au

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.


From: Darquise (Darcy) Paquet
8444 Marionville Road
R.R. #1
Winchester, Ontario
KOC 2KO
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.


From: Lin Peszat

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.


From: Evelyn 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.


From: Marilyn K. Schmalz
4219 Castlewood Parkway
Columbus, Georgia 31907-1651
(706) 569-6826
e-mail : 105575.462 @compuserve.com

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, as well.

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.


From: Alice Taylor
582 Bobwhite Trail
Akron, OH 44319
e-mail: Tay5@aol.com

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 Professionals

From: Dr. Taral V Nagda
Department of Orthopaedics
King Edward Memorial Hospital
Parel Mumbai(Bombay) 400031
INDIA
Fax 9122 4143435
Phone 91224124075
e-mail: taraln@hotmail.com

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.


From:

Dr. Ann Van Heest, Assistant Professor
University of Minnesota,
Dept of Orthopedic Surgery
420 Delaware St. SE
Box 492
Minneapolis, MN 55455 (612)625- 1177

Gillette Children's Specialty Healthcare
200 E. University Ave
St.Paul, MN 55101 (612)291- 3898

Arthrogryposis Clinic,
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.


From: Bret 0. Baynham, M.D
Palm Beach Orthopaedic Institute
3401 PGA Boulevard, Suite 500
Palm Beach Gardens, FL 33410
(510) 694-7776
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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Short Notes

Disability Advocates
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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