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Versión Español de este artículo (Spanish Version)
By Jeanette McClennan, Parent, Baytown, Texas
Abstract: A parent describes her experience at the DeMorsier Syndrome/Optic Nerve Hypoplasia/Septo Optic Dysplasia Conference.
Keywords: Family, blind, deafblind, national conference, DeMorsier syndrome, Optic Nerve Hypoplasia/ONH, Septo Optic Dysplasia/SOD
My name is Jeanette, and we have a son who will be nine years old in October 2004. James has DeMorsier Syndrome/ONH/SOD. DeMorsier is the name of the physician who first diagnosed children with ONH (Optic Nerve Hypoplasia) and SOD (Septo-optic Dysplasia). ONH/SOD have similar traits (and I am not here to argue the difference), but they include underdeveloped optic nerves, midline abnormalities and underdeveloped pituitary glands.
I recently went to a Family Focus conference in Kansas City, Missouri. Yes, it's a little further from home than I usually travel, but it was well worth the trip. This is a national conference focused on providing information about ONH/SOD and other related conditions. I wanted to let everyone know what a wonderful conference this was.
Dr. Mark Borchert who spoke on ONH was very informative, and I felt that I got a lot of information from him. He went into some detail on what studies have shown to cause this disorder. He also spoke of the different medical traits that can occur with children having ONH/SOD. Dr. Jill Jacobson spoke on SOD. She was a good speaker with quite a bit of information, but I must say, I didn't agree with everything that she had to say.
Friday evening we took a charter bus to a local church where we had a barbecue dinner and were privileged to hear Kodi Lee sing. Kodi Lee is an amazing young man who not only has ONH but is autistic as well. He does not communicate well verbally, but he can sing and play piano. It was quite amazing to see and hear him. Kodi listens to the song or music and in a very short time can play and sing the song back. He really got the crowd rocking with "Great Balls of Fire" and other songs.
On Saturday morning a behavior analyst, Dr. Campbell Thompson, discussed behavioral traits and medical problems some of these children can have. He was a very entertaining speaker. Last, but certainly not least, was Craig Reeves, an attorney in both Kansas and Missouri, who spoke about special needs trusts. Mr. Reeves discussed different options for providing for our children that would not cause them to lose the benefits they may be receiving now or in the future. I learned so much from all of the speakers. Each provided me with information that previously I had not considered relevant to my child.
The Family Focus families are a wonderful bunch of people who were so friendly. They had a silent auction to raise money to help defer the cost of the conference to keep the cost down for the families wishing to get a better understanding of ONH/SOD. We had a good time outbidding each other. The only thing that I wish could have been different was to have brought my child with me. Family Focus provided childcare, keeping the children well entertained. My son stayed with his grandparents and had a wonderful time being "spoilt" but he would have had such a good time with the other children and swimming in the indoor pool.
Next year's conference has not been finalized but it is to be held in New Mexico. Further information on ONH/SOD is available by going to www.focusfamilies.org.
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