Mitochondrial Diseases Support Group

Mitochondrial diseases comprise those disorders that affect the function of the mitochondria and/or are due to mitochondrial DNA. The effects of mitochondrial disease can be quite varied. Since the distribution of defective DNA may vary from organ to organ within the body, the mutation that in one person may cause liver disease might in another person cause a brain...

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Genetic & Metabolic
/ Mitochondrial Diseases Support Group

10 month old with mito

deleted_user
deleted_user
My son has had problems since birth. to make it simple I will just list the problems: GERD, failure to thrive, dysphagia, dysautonia, aspiration, abscent seizures, exercise intolerance, edema, he sleeps most of the day and through the night. the list goes on. he just started doing an army crawl, cannot sit,he is tube fed but can drink by mouth but does not drink enough to sustain himself. I really would like people to talk to about Bentleys problems:(
deleted_user
deleted_user
I am so sorry. I am an adult with mito (28). There is a woman in my support group thats son sounds like yours. His symptoms were the same and he is around 10 I believe? I know he is on medication daily but goes to school and socializes with friends like a normal child. His mom does say it is hard at times but she would not trade her son for anything. I know it is different for each case and I pray he gets what he needs soon, but he has you and that is what he needs the most. At 28 all I still want at times is my mommy
deleted_user
deleted_user
mightymitomom, I'm researching a story for Genome magazine about an experimental procedure under consideration by the FDA. It involves a transplant of donor mitochondrial DNA to prevent the passage of mito mutations to your offspring. I'm looking for women who would be interested in such a procedure and would like to talk about why. The input of women like you would provide a useful perspective for the ongoing debate. Please reach out if you'd like to talk about your experiences.

Brantley Hargrove
brantley.hargrove@gmail.com
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