Matthew is the youngest of our three boys. He has been diagnosed with Mitochondrial Disorder Complex I and III, Chronic Intestinal Pseudo Obstruction, FTT and Glucose Intolerance. He has been through countless tests and procedures in the past 8 years . We do not know what the future holds for him, but we are going to do our best to cherish every day with him. Stay strong little man.
Matthew got his new Alien Print AFO's today in Saratoga. He seems to be ok in them so far. He wore them for about an hour all together today. We are to increase the amount of time that he wears them a little bit each day.
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My daughter Emma is 5 and was just diagnosed with mitochondrial disease in 01/09. She just got a leg brace for her right leg. It looks very similar to the ones your son is wearing. How long did it take before he got used to them? I can't find shoes that work for Emma with the brace, so I had to buy two different sizes! Do you feel very isolated when trying to connect with other parents whose children have the disease? Is it normal to love your kiddo but feel like you want to hide in the closet and yank your hair out? How is your son now? My email is: grace_inescapable@juno.com if you want to contact me. Thanks! :) Hannah
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