So, Will's newest diagnosis is totally beyond my grasp. So, tonight, I sat down and opened about 75 tabs on my internet browser, printed off about 50 pages that I can take with me and read tomorrow, joined a message board for parents of chronically ill children, and had a good cry.
So, if any of you feel like crashing your internet browser by having way too many tabs open, here are a few links for your googling pleasure.
umdf.org is the foundation for research and support of those with mitochondria disorders. Fabulous website.
mda.org A lovely bit of information is that mitochondria disorders fall under the umbrella of muscular dystrophy. Not a comforting thought, but it does open up some opportunities and help. It also allows Will access to the Make A Wish Foundation. Not something we need right now, but something to keep in that back pocket for when we get further down this rather ugly path.
There are several different types of mito disorders. Will is looking at Complex III, Complex V (the one that drives the bus, also known as OXPHOS). Neither of them is pretty. Some are worse than others. I'm not really sure where we are in that spectrum.
I also should receive a call back from Will's neurologist Friday. Beyond the prescriptions I've been trying to get for the last month and the letter for the insurance company so they might pay for the insanely expensive Coenzyme Q supplement (high dose CoQ10 that is the most bioavailable is available from only one lab.), I need to ask her about the Mito Cocktail of supplements that we may/may not need and ask why that wasn't mentioned... Please pray for that conversation...
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