We took Nate to Children's Hospital in Milwaukee on August 9th for his first treatment of Spinraza. This is the first and only FDA-approved treatment for SMA, which is a genetic disease in which a lack of survival motor neuron protein affects the part of the nervous system that controls motor function.
That is why he uses a wheelchair. SMA stands for Spinal Muscular Atrophy, and Nate has SMA 3.
We have been waiting a long time for Spinraza to be approved!
But we finally got the call the Nate was approved! This happened in early July, which led us here, to this first appointment!
Natie tho...lol! I'm like, let me take a picture to remember this historical day!
We go back in 2 weeks for another treatment...2 weeks after that, 4 weeks after that, then every 4 months thereafter.
The drug is administered via spinal tap, so he is sedated first. Awww....little man!
None of the trials kids had Ds, either. Nate is making history and his charts and progress will go down in medical records for future Spinraza studies!