Ran into ~L~ at

work today as I was putting out the box mail. I worked with her years ago. I was there with her and the rest of the girls when the call came in that ~ I a n ~ had tested positive for Duchenne. She was about to cry today when I told her how old he was. Yes, it’s that scary. Everyone in his life is trying desperately to stop time. Stop it and give it all to him. Boys with duchenne – they don’t beat it. It’s not like cancer and you have a sliver of hope. I know we have none. There is no hope. There’s no cure, fuck, there’s no treatment. Nothing but steroids. Help the body now, so your bones can pay for it later. Like 9 calcium infusions, 5 broken bones, and soon-to-have spinal rods later. There are some trials going on , but they all want ambulatory so they can gauge progress – and I get that. But gggeeeebus, they need to hurry the fuck up. Exon 53 is in the works – that’s the one ~ I a n~ needs. He has a deletion of 45-52, and this trial drug targets that range. This drug is supposed to fill in the blanks as the body goes to form a muscle and there is no dystrophin to complete the job. It’s not perfect, and it’s not a cure, but it might hold things off a little longer. Maybe long enough for some brilliant young scientists to bless us with a cure. Please.

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