We didn't know where to go or who to turn to for help. We read all the articles that were given to us, unfortunately they didn't seem to have the information necessary to help us with Alex. We had no idea what to expect. Do these children have problems recovering from surgeries? Should we operate on the overgrowths? Should we expect a long life? Should we prepare ourselves for the worst? How do we handle this? Are there others out there that can guide our way? These are questions that we asked ourselves over and over.
I finally contacted a doctor that published one of the articles and asked her some of these questions. Unfortunately, she did not know many of the answers because nobody had compiled any information about this syndrome. The reason for this was simple, there were not enough cases for any one doctor to spend a substantial amount of time working on these answers. Most doctors will never even see a child affected by this syndrome and those that do more than likely never see two. She suggested to me that I begin a support group, in the hopes of getting enough people with proteus syndrome together. This group possibly could interest doctors in helping us with our cases. So that is what I am doing. I think it is very important that we stand up and be recognized. Unfortunately my time can be a bit limited due to raising two, soon to be three little boys, doctors appointments, work, and everything else that constitutes living in the 90's. So please forgive me if it has taken longer than expected to get this newsletter together. Anybody who has any contributions they would like to make to the newsletter are welcome to do so at any time! If you would like to submit pictures or questions for the board of directors to look over and try to answer please feel free to do so. I hope we can fill the following newsletters with questions, answers, information, inspiration and love.
PROTEUS SYNDROME FOUNDATION BOARD OF DIRECTORS
PRESIDENT: KIM HOAG
SECRETARY: MARY TIMMERMAN
TREASURER: BARBARA KING
MEDICAL ADVISORY BOARD
Michael Cohen, DMD.PhD. Geneticist Dalhousie University, Halifax,Nova Scotia, Canada
Robert J. Gorlin, DDS. Geneticist University of Minnesota, Minneapolis
R.Neil Schimke, M.D. Clinical Geneticist University of Kansas Medical Center, Kansas City
Debra L. Collins, M.S. Genetic Counselor University of Kansas Medical Center, Kansas City
Mary Nagy, M.D. Pediatrician Lenexa, Kansas
The Proteus Foundation was founded to educate, support and raise money for grants and research toward finding a cure for children and families living with this syndrome.
The Proteus Syndrome Foundation's efforts are dedicated to the loving memory of Patrick Conlin King 3/24/87-10/9/92
Periodically a doctor may request information from our organization to compile his own database to help patients. We greatly appreciate the interest in proteus syndrome and will do our best to help the doctors get information. Dr. Mark Asher at K.U. Medical Center in Kansas City, KS. has requested information about scoliosis in patients with proteus syndrome. Please take the time to answer these questions to help doctors make better recommendations for scoliosis maintance in proteus syndrome. RETURN QUESTIONAIRE TO: Kim Hoag 609 S.E. Mt.Vernon Dr. Blue Springs, Mo. 64014 or e-mail to email@example.com
Please return this questionnaire as soon as possible, even if the answer to #1 is no so we can get an accurate account of how many with Proteus have been affected with scoliosis and how it has been handled.
THE COURAGE OF A CHILD In November of 1970 our family was looking forward to the arrival of our third child. On November 25,1770 we were blessed with our third son. We named him David after King David in the Bible. Little did we know then that he would possess great courage as did his name sake. Our other sons, seven and eight at the time were excited to have a new baby brother in the house. They could hardly wait to teach him to play ball, fish and do all the things that little boys like to do for fun.
Soon after we brought him home from the hospital david developed Colic. He would cry for hours. His little stomach hurt so bad. As with any parents, we only wanted David to feel better. This went on for three months. We tried many treatments but only time took away the colic. It was during this time that we discovered a large growth in David's abdomen. This was the first sign that something was seriously wrong. Here was our baby son who we loved so much and we didn't know if he would live or die.
We prayed that God would give us strength to cope with what was happening, but more over to give David the courage and the strength to endure all that lied ahead for him. A benign tumor the size and shape of a small banana was removed from David's abdomen. The doctors were wonderful throughout the whole ordeal and we thanked God for all they did for David.
At the age of four David was diagnosed with Neuro-fibromatosis(N.F.). Over the next several years he had to undergo seven more surgeries and we worried, of course as all loving parents would, how David would recover. But over time his wounds did heal beautifully.
When David was fourteen, the doctors ran an extensive battery of tests. They discovered that he had been misdiagnosed with N.F.. Through these tests they were able to determine that David suffered from Proteus Syndrome. The Doctors explained that since there was little known about Proteus Syndrome it was easily misdiagnosed.
We always believed that David, though having this disorder, should be treated like any other child. And that's the way David grew up, playing little league and other sports just like other children in America. He was our shinning star.
As loving parents we all want to protect our children from as much as we can. Unfortunately we can't always do that. There were many times when the other kids would make comments or stare at David's legs. This would upset him and many times anger him. We did our best to explain that others didn't understand and that he had to let it go. The mental anguish that our son had to endure over the years because of his disorder was heartbreaking. David had to wear special made shoes, one having an extra 3-4 inch sole so that he would be able to walk with out a limp. He would cry and say he wasn't going to wear them. We told him he had to and I'll never forget what he told me when he was 5 yrs. old. David looked at me crying and said "What if it was you?" I held him in my arms and we both cried. Deep down I wished that it had been me instead of David. It was so painful for me to see my son suffer the way he had because of this disorder and I just wanted to take all the pain away.I didn't know what caused this infliction. I thought it may be my fault, but I just didn't know how.
David is now 26 years old and things are starting to level out for him. He has grown from our precious little boy into a fine young man with hope for the future. There have been more surgeries, more challenges, many ups and downs. We prayed a lot and our prayers were answered. David has overcame many challenges in his life and has kept going. This has made him what he is today, a caring and sensitive young man. I look back over the years of what we as a family have been through and know it was with the help of God that we made it. Davids courage helped us all overcome the rough times. We thank God each and every day for all that He has given us in David.
Mary Timmerman St. Louis, Mo. March 13, 1997
Mary is the secretary of the proteus syndrome foundation. I wish to thank her very much for this wonderful letter..
Please feel free to submit your own personal experiences.
I am interested in supporting Proteus Syndrome Foundation, Inc.
Phone: ( )______________________________________________
Child_____ Other Relative_____ Educator______ Friend___________
Health Professional_____ Physician_________ I Have Proteus Syndrome_____
Please make check payable to Proteus Syndrome Foundation, Inc. and mail to 8485 Dulwich, Cordova, Tenn. 38018. All monies received by PS,Inc. are tax deductible and go to support education research and support services for those affected by Proteus Syndrome and their families.
In an effort to improve the quality of life for our family and friends with proteus syndrome, we welcome ideas from our readers on various techniques of management and care, general and educational suggestions that individuals have investigated and/or found beneficial. This exchange of ideas is welcome. Parents and others have the opportunity to decide if they want to follow through with the suggestions. We do not, however, as an organization, support or endorse any particular treatment, therapy, or medication. We encourage parents to support one another with suggestions and to contact their child's phusician for final approval.
KIM HOAG 609 S.E. MT. VERNON DR. BLUE SPRINGS, MO. 64014 unless otherwise instructed
We will be publishing a spring, fall, and winter issue of the Proteus Syndrome Newsletter. In the event that important matters arise in between these publishings we will send out Family News Bulletins to keep everybody current.
Any pictures submitted for publishing can be returned to you.
THE PROTEUS SYNDROME FOUNDATION INC, IS A NATIONAL NON-FOR-PROFIT ORGANIZATION DEDICATED TO INDIVIDUALS AND FAMILIES AFFECTED BY PROTEUS SYNDROME AND RELATED DISORDERS.
PROTEUS SYNDROME FOUNDATION 609 S.E. MT. VERNON DR. BLUE SPRINGS, MO. 64014. E-mail: firstname.lastname@example.org
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