Spina bifida at s2 level

Hi everyone! I am from the Philippines with a 6month old baby girl diagnosed with SB. Does anyone in this group has the same diagnosis as my baby? Spinal bifida involving the sacrum from the s2 level inferiorly with lipomeningocele,low lying and posterior tethered cord at the s2 level as well as intraspinal and extraspinal lipoma. This is the result

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Letter to Parents Blog Post (Link included)

Hi! I have SB and am in my 20s. Several months ago I wrote the following letter to parents on my blog. Tina has asked me to share it here. Please feel free to follow the link to my blog and I highly recommend checking out the tab called “For Parents” at the top. https://theglobalaccessfiles.wordpress.com/2017/03/24/a-letter-to-parents-of-kids-with-disabilities/ I’ve been privileged to talk

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Congenitally Dislocated Hips in a SB 1 year old – anyone get a SPICA cast for their kid?

Hello Everyone, My husband and I have taken our son (who is now 1 year old exactly), to several specialists at Shriner’s, regular hospitals with Spina Bifida clinics, and even a retired bone & joint specialist.  We are convinced that a spica cast could help him as he has nerve innervation (as far as we can tell) to both legs

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The Story of My Leg – ExoSym Carbon Fiber Leg Braces

Usually when I walked, I would lift one leg and collapse into the knee, then do the same with the other, over and over. Thanks to the support of the braces, I got a sense of what it was like to move with an actual heel-to-toe rollover motion. I looked up at Ryan. “Fuck, man,” I said. “Let’s do it!” I headed back to Los Angeles, where my daydreams, for once, had a happy ending.

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