Day 3 started off with a session with parents, led by Dr. Tim Brei and Dr. Lynda Mulhauser. This was a session with parents of adults with Spina Bifida aged 18 and up. The oldest “child” was 58!! Major issues that came up in the discussion were: education, employment and driving a car.
(parents’ chat)
I left the session halfway to attend the session where brothers and sisters would speak out. This session drew my attention because I am a brother to a young man with Spina Bifida. Siblings have a special role in a family with a child with special needs. A lot of the attention of the parents goes (rightfully) to the child with Spina Bifida. The siblings, all aged 13 to 19, formed a panel for a public of parents. A lot of interesting questions cqme from the parents. Brothers and sisters were very honest about all issues of having a sibling with a disability, but they were equally outspoken on the positive elements. All were extremely proud of their brother or sister with Spina Bifida.
(panel of brothers and sisters)
The celebration luncheon celebrated 35 years of SBA. The organisation awarded scholarships to outstanding youth with Spina Bifida. Several awards were handed over to outstanding members of SBA and outstanding individuals.
The last session of the day was an update of the genetic and environmental study of Neural Tube Defects at the Center for Human Genetics at Duke University Medical Center. Dr Debbie Siegel presented what is currently understood about potential genetic causes. They are still looking for families with at least one person with Spina Bifida to make this study more complete. Check here or call +1-866-385-3683 (toll free).
