Anyone Touched by Mitochondrial Disease out There?

MarlinWil

Hi,

My name is Wil and my little girl was diagnosed with Mitochondrial Disease on 4 September, 2011. Her initial prognosis was 12 months life expectancy, tops, and her wonderful team of specialists have been delighted to revise that to many more years ahead of her. There is no treatment, and there appeared to be no hope, but she has an incredible resilience, and is now kicking incredible goals each and every day, and almost normal in every way.

Life has changed, and a year on I am very interested in connecting with other parents or sufferers.

Thanks for responding.

Wil
xx

1140nate

Wil - My story is a little different, but I can identify with yours. My wife passed away just over a year ago. She had mitochondrial disease. I wanted to share with you that she had a very full life - working around what were real challenges from mito. I hope your daughter will surprise everyone. If you like you can read more about my wife's story at shannonsgift.com - I am working now to try to raise awareness and support for research on mito issues.

Booksandbeaches

Hi Wil! I have a friend in another part of my country who has a son with a mitochondrial disease. It took years to diagnose him. I think he was maybe around age 5 when he got the muscle biopsy. Is that how your daughter was diagnosed too?
My friend's son has some inborn error in how he metabolizes fat for energy. I know she told me the name of his condition, but alas my memory is like a sieve. He is now around age 8 or so. Doing well. He is on some special diet, has to be very careful with anesthesia, can't fast (makes his condition worse), and there are some other restrictions, but he is thriving. I don't think his life expectancy is that greatly affected.
My friend used to be active on this board which supports parents of kiddos with mito problems.


http://parent-2-parent.com/forums/forumdisplay.php?40-Mitochondrial-Disease-amp-Metabolic-Disorders&s=696ad0c90c705909eda3785812695800