DeathByCheetos365 karma2016-07-24 18:27:47 UTC
Hi, how do you feel about the future of SMA treatments?
My infant son was a type one who passed last week at 8 months. We were fortunate to get him into the SMN-RX phase 3 clinical trial and hope that his sacrifice might allow for you and others in the community the chance at regaining lost strength and give others a chance at a normal life.
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DeathByCheetos62 karma2016-07-25 00:46:40 UTC
I'm so glad that there is hope. I'm really happy to see this on the front page of reddit. I regret that I knew nothing of SMA before our son was diagnosed. It is truly a nightmare condition.
We are giving everything we can back to the SMA community now and were blown away by the support of organizations like CureSMA.org and there new diagnosed survival kit and car bed.
DeathByCheetos25 karma2016-07-24 23:30:22 UTC
Thank you, at the time the it was the hope for our son that he may have survived SMA. We're glad he could contribute. I wouldn't wish this condition in the worst of people. It is truly horrible.
DeathByCheetos22 karma2016-07-24 23:26:05 UTC
DeathByCheetos20 karma2016-07-24 23:25:10 UTC
We didn't know until he was over two months old. We noticed "hypotonia" which is low muscle tone. Being 30 something's and ignoring everyone's advice we started googling what it could mean. SMA was one of the first results. We spent the next two months fighting with insurance to get genetic testing approved.
When the results came in, we had gone through a battery of other tests that almost confirmed SMA as the diagnosis. SMA is a rare condition. I wouldn't let it ruin the experience of having new life.
We are lucky that we have a 3 year old who is negative for SMA. He makes things easier l.
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