Our family is heartbroken that there is finally a treatment for this degenerative disease but is not funded by the government. At $785,000 for the first year of Spinraza we can not afford to fund this drug ourselves, nor can we afford to lose any more time since best results occur before the age of 2.
Orson was diagnosed at the age of 8 months with a rare disease called Spinal Muscular Atrophy (SMA) Type 2, even though clinically he presents as a Type 1.
SMA destroys the nerves that control voluntary movement like crawling, walking, head and neck control and even swallowing. SMA is the #1 genetic killer of children under the age 2.
1 in 6000 babies are born with SMA. 50% of the children diagnosed before the age 2, will die before their 2nd birthday.
Our son Orson has been robbed of his ability to hold his own head up, to roll over, to sit, to crawl and to stand. The muscles around his lungs are also weakened, he may need a breathing tube and feeding in the future unless he gets the treatment he needs.
Help us prepare to secure this life-saving treatment for Orson by supporting his campaign.
If you would like to make a donation but not through gofundme you can e-transfer to [email redacted] .
You can find out more about Orson by going to his blog https://carolkherzog.wixsite.com/blog
DonationsSee top donations
- Christine Moreira
- Chris & Chris Welch
- Nadia Ruffolo
- Dena Porter
- Jennifer Jones Lapointe
Fundraising team: Orson's Carebears (3)
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