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Please do your research. This isn’t rare at all why say it’s rare when it isn’t. It simply isn’t widely discussed and should be. I wish people were more proactive about raising money for this research. What a special little boy and special family. Always remember my niece who we lost to spina bifida and smile when I see roman and know the great life that lies ahead of him. That is amazing the he is walking. I never saw that before. I worked with special needs children with spina bifida thirty five years ago and never ever saw them walk, always in a wheelchair.

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