Some pretty exciting news from Will's Mito doctor!
"We are happy to announce that the UT Mitochondrial Center of Excellence will be opening the first Leigh syndrome clinic in January 2013. This clinic will be held on the second Friday of every month and will be dedicated to the care and research of patients diagnosed with or suspected of having Leigh syndrome."
This is incredibly awesome news for us as Will has Leigh's disease. In no way am I "downgrading" other mito diseases - many of them are fatal - but Leigh's is as well. To have a time to be in the clinic with only other Leigh's patients is going to be awesome.
It's a good opportunity for the doctor to find commonalities, issues and perhaps even better treatment options if all the patients come in during the same time period.
Happy Friday!
Cousin Carson and Will "going to work" with Papa's ties on
My heart is overflowing reading this news. Didn't you just kinda wish for this a few posts back?...well not exactly this but darn close! Been checking this blog like a maniac lately. If you have a lot of "visitors" on your blog count, its not a creeper....its me. Well, maybe I'm a creeper, but a nice one. HAHA. Big hugs, Martin family! You are loved <3.
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Where is this being held? My granddaughter has Leigh's.
ReplyDeleteAdorable picture of the boys!! So glad to hear this about the clinic!! Great news!!
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