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Reaching out

tuckers01 Message
18 Nov 2008, 03:55 AM

My son, Brody, was recently diagnosed with complex V mito disorder. He has a point mutation on the ATPase 6 & 8 genes. I am trying to get in contact with others that have a similar diagnosis, especially complex V. I know complex V is very rare, that's why I'm reaching out. I would like to know others out there affected with mito and what your journey has entailed. You can visit my son's site at His liver and muscles are affected. He also received a heart transplant at 3 months of age. He relies on TPN through his central line catheter. I am trying to resume his g-tube feeds slowly to see how he tolerates it. He is physically delayed as well. But he is a VERY happy boy and knows he's loved:)
Haas2643 Message
9 Dec 2008, 09:50 PM

My daughter, Lilly, was diagnosed with a complex IV mito disorder at 10 months. She died in April when she was 20 months old. I would love to share with you our journey or help with any questions, even though the diagnosis is a little different. I think its really great that you were able to identify the mutation. We could never figure out what was causing Lilly's disorder--mutation, etc... You can read more about her at "LillyHaas"