After a month of lobbying for home health infusions, we finally got the IVIG once a month for 8 hours in the comfort of our home.
When I asked him if he was excited he said I’d rather not do it at all… I said I totally get it and we need to celebrate all the wins when they come.
IVIG is part of the treatment for Stiff Person Syndrome, a very rare neurological disorder that effects the nerve endings in the brain and causes stiffness and spasm episodes, limits your activity, and in his case created scoliosis and hip dysplasia.
I post because I’m always looking for other families going through the same with young kids cause mostly it’s adults.
Thanks for your support in our journey.
For more info on stiff person syndrome
https://www.stiffperson.org/
Or to donate to:
Xander’s fund
https://gofund.me/697e6447b
