Jackson’s life saving treatment

Our son Jackson, currently 19 months old suffers, from a rare genetic neuromuscular disorder named SMA or spinal muscular atrophy type 2 that is a progressive chronic disease which slowly over time atrophies all of his voluntary muscles including those that control swallowing, breathing, standing, walking, any muscle movement throughout the body. SMA in no way affects individuals congnitively, and often they are of higher intelligence. Jackson is being denied an FDA approved gene therapy drug named Zolgensma label approved for ALL types of Spinal Muscular Atrophy for those UNDER the age of 2. Anthem is placing limitations on age only allowing those under 6 months coverage of Zolgensma. Our son was not even diagnosed until 11 months of age, at the time Jackson was born Indiana did not test for SMA on their newborn screening. For us to have been diagnosed and approved for gene therapy within their limitations is impossible. We are currently fighting our third and final level of appeal as an external review  with Anthem. Zolgensma is the world’s most expensive drug with a price tag of 2.1 million dollars. Every day, every moment spent fighting appeals is a day Jackson’s fights the progression of the disease, robbing him of more and more of his strength, all the while he gets closer to the age of 2 and becoming ineligible to receive this treatment at all. Please help us by raising money to provide this treatment for Jackson before he reaches the age of 2 in December 29,2019. If approval is obtained all proceeds will be donated to the cure SMA foundation. 

You can follow Jackson on his Facebook page “Jackson's journey with SMA type 2” to help share our story and follow our journey.
The link to Jackson’s Facebook site is as follows:
And
https://m.facebook.com/teamjacksonSMA2/?ref=bookmarks