Category Archives: General

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. I’ve been privileged to talk

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Helping my 3 1/2 yo slim down

Hello! My husband just found this page and I just signed up. I can’t believe we’ve made it over 3 years and never found this wonderful website. Everyone here sounds amazing!   Our son seems to have a higher level lesion than the most active posters from what I can tell. He needs KAFO’s at the very least, but would

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