Jedediah’s Story

Site created on May 15, 2018

In April 2016, Jedediah was diagnosed with Spinal Muscular Atrophy, Type 2 (SMA).  This was the start of many doctors visits and tons of medical information to understand for our family.  The following Christmas, the FDA approved the first treatment for SMA, and Jed was blessed to receive the treatment one year after his diagnosis.   A child who could not roll over or sit up anymore, was once again, sitting up  on his own, wiggling his feet, doing a modified army crawl, and pushing the limits everyday  of what his body told him he couldn't do.  This treatment has been life-saving for him.  The newest development with Jed is that his is wanting to stand barring weight and wanting to take steps towards walking.  We were referred to a orthopedic specialist.  Due to not standing or having weight on his hips for three years of his life, his hips are currently 40% out of socket and the angle is not where it should be.  To correct this, Jed is having hip surgery at Gillette Children's in St. Paul.  Thank you for supporting us during this time and along our journey.  

Newest Update

Going home

Journal entry by Erin Visker —

He made huge strides today.  We are headed home!
Read More of the journal titled "Going home"
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