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Spring 99 Table of Contents
Versión Español de este artículo (Spanish Version)

By Stacy Nokes, Mother, Houston, Texas

The MAGIC Foundation (Major Aspects of Growth In Children for Children's Growth and Related Adult Disorders) provides support and education to families of children with growth disorders. They can be contacted by calling (800) 3MAGIC3, or by visiting their website at   Their annual conference includes top-notch specialists interested in rare disorders such as septo-optic dysplasia (SOD). The 1998 Magic Foundation Conference was great, I learned a lot and met many interesting people.

We are not rich people, so we had to come up with ideas for funding our trip. Benefits were out of the question as this was not a medical expense. We decided to make crafts and toured the crafter's circuit. That didn't make nearly enough money so I went to Ashley's vision teacher for ideas. She gave me a list of resources, and I began calling right away. Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) and the Texas School for the Blind and Visually Impaired agreed to help with expenses for our trip. I went with another family from my area so we could share costs. We raised money through family and friends. We contacted the local VFW, Lion's Club, and churches. We rented a van and drove from Houston to Chicago in 19 hours, and it was well worth it.

Some of the things I learned from two doctors who spoke to the SOD families at the conference include:

  • Vision will improve until age five in children with optic nerve hypoplasia (ONH) who already have sight. ONH is not a degenerative condition.
  • There is a difference between hypopituitarism and panhypopituitarism. Hypopituitarism means a person is only growth hormone deficient. Panhypopituitarism means a person is growth hormone deficient and has other hormone deficiencies.
  • Only 4% of all children with SOD/ONH truly have diabetes insipidus. In some children it may appear that they have diabetes insipidus because their thirst center (hypothalamus) is not properly working.
  • Some doctors consider SOD and ONH the same disorder.
  • All children with SOD/ONH should be tested for hypothyroidism.

If you are interested in learning more about SOD/ONH you can contact the SOD division directors, Cindy Rose or Pilar Hari at or visit the website of Septo-Optic Dysplasia/ Optic Nerve Hypoplasia Support Group Homepage   They videotaped the doctors' presentations and are willing to share them with families who couldn't attend the conference.

Although there was paperwork involved in getting reimbursed for my trip to the MAGIC Foundation Conference, the hardest part was finding out who to call to get financial help. We are already planning for next year's conference trip by making disabled dolls and guardian angel dolls to add to our craft collection. If any of you want to attend a national conference and don't have the money don't be afraid to ask questions. There is always a way.