I do not normally put a lot of my personal life on this blog – it’s all about the books. But right now I need to make an exception to that rule.
You see my son, who is 36, has Spinal Muscular Atrophy – if you’ve ever watched the Jerry Lewis MDA Telethon in the past, SMA is one of those diseases..
On December 23, 2016 (hours ago) the FDA approved Spinraza as a treatment drug for patients of all ages who suffer with Spinal Muscular Atrophy. What that means to us out here in the world is a drug that will be taken every day for the rest of the patient’s life… that has the ability to reverse the affects of Spinal Muscular Atrophy. It’s a treatment. Is it a cure? Depends on your interpretation of that word… to me the answer is YES.
For millions of people around the world – today is a very, very good day.
I’ve never sobbed such happy tears in my life as I am right now, even as I’m writing this.
Here is a link to the breaking news announcement that explains just why we’re so excited about this… FDA Approves Spinraza for SMA
I do not have adequate words to express my emotions right now. Unbelievable joy and thankfulness is as close as I can get.