A year ago today we lost our Maggie to mitochondrial disease. A disease that it took 2 years and doctors in other states to get diagnosed. It is extremely rare, and almost always fatal. There is no cure for mito.Please watch this video, don't pass it by. Spread the word about mito. We need to find a cure so we don't lose any more friends!
So sad that so many kids I know have already passed away from this horrible disease! Thank you for raising awareness...it is the only way a cure will ever be found. Meanwhile we just take each day as it cones and thank God for the time we have with our princess!!
ReplyDeleteHUGs. Losing a friend is one of the worst feelings, and having a friend lose their daughter is worse. Mito sucks. Having any rare disease sucks, because it takes so long to get diagnosed.
ReplyDeleteWill you please educate me? I also read Reagan Leigh's blog and know she is four. Is this a fatal disease or is it something they can survive? I would be grateful for some more info. Such beautiful little girls.
ReplyDeleteThank you so much Lacey for sharing this! This means more than you know! We miss her so much this disease sucks so bad!
ReplyDeleteContinued prayers for your Jax!
I don't know much about that disease, but I ddn't realize it was fatal...
ReplyDeleteYou аctually mаke it ѕееm
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