One of the research assistants I mention here now has her phd and is doing her part to educate the next generation of teachers. I heard from her this morning because one of her students came across a kid with mito and she wanted to share this blog post with them.
Danny turns fifteen on Monday. It’s been almost ten years since that first visit with Dr N. And while we still are searching for the genetic “smoking gun” he has improved so much on the cocktail. I shudder to think of where he might be had I not behaved like a pushy crazy mom.
Not everyone is reading all three parts of how we first heard of mitochondrial disease. Here it is all together.
In Losing Danny I spoke of how we first discovered autism.
Now, let’s chat about the first time I heard the words Mitochondrial Disease.
Danny had these funny regressions.
Regression is thrown around a lot in the autism world, to get more therapy, you have to show a skill loss. That’s not what I am talking about here. Danny would literally be able to do a skill one day and then the next have it be gone. It looked like non compliance to us in the beginning, but after a while we would realize that the skill was just gone.
Ok, so how do you prove it to the outside world? In the land of “mom reports”, not much I say is taken seriously…
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