Administration of Spinraza at University of Michigan

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My son is affected with Spinal Muscular Atrophy Type 1.

The prognosis of this condition is devastating, and even more so when not diagnosed in a timely manner.

I was a parent who knew when my son was 4 weeks old that something was very wrong. While I tried to stay optimistic when the multiple physicians offices and urgent cares I took him to tried to convince me that I was "over reacting" and that I just needed to give him time to "catch up", it soon became very apparent he was going downhill.

It wasn't until my son was taken to Borgess Woodbridge Hills at 3 months old for our 8th encounter with a physician that we were taken seriously.

That is a day I will never forget.

They came out to the waiting room to check his vitals and immediately said, "We aren't doing this out here." By the time I finished signing insurance paperwork at the front and got back into the room, an ambulance was on its way. As we loaded up in the ambulance, the physician ran out and urged the ambulance to use lights and sirens, and to get to Bronson Methodist Hospital as fast as they could. We arrived at Bronson and Connor was blue, sitting at 40% oxygen, an immediate XR of his chest showed both of his lungs whited out, he was subsequently intubated, and 10 days later I had the confirmation on paper that I so desperately hoped I wouldn't hear.

From there, it was disappointment, "this isn't a life", "there are no options", "its terminal, he will be lucky to see 6 months, maybe a year, definitely not two." Every google search was devastating. 90% of these kids won't survive to age two. It was a battle for everything, and we still left on Hospice care, only to go to a funeral home to pick his casket out, plan a funeral.

Luckily, we found hope through other families and went to the only hospital in Michigan with any sort of experience with multiple children with SMA. He just turned 4 in September.

FDA has now approved Spinraza, the VERY FIRST treatment ever approved by the FDA for this terminal condition, but for some reason, the majority of families, including those in Michigan, have to continue to be "patient." There is no time to waste for this disease. Our son, and many others, have surpassed their life expectancy. We have waited patiently for trials, waited patiently to be selected for EAP's, waited patiently for FDA approval, and now we need to wait patiently before the hospitals decide if they will administer a LIFE SAVING treatment to our kids. It's not only for my child, it's for ALL children, including those unborn, this will help eradicate type 1 as we know it! PLEASE sign this petition to bring Spinraza to us!!!! No family should have to live this devastating nightmare again!!



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