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 www.caringbridge.org/visit/brodytucker. 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:)

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 www.carepages.com "LillyHaas"