Has anyone ever heard of mitochondrial disease?

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For those of you who haven't heard of it here is what it is: Mitochondrial disease result from failure of mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fali and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. That's just a little bit of information on it. If you would like to know more just go to www.umdf.org . Anyways, the reason I am asking about this is because one of my friends has 5 children. Well 2 of those 5 children have this disease. Doctors suspect that the only 3 could have the disease but aren't showing symtoms and it hasn't been discovered yet. The youngest little girl that has it is 9 months old. She has been on a feeding tube since she was 2 months old and all of her organs are slowly shutting down on her. They don't expect her to live to be 2 years old. The other one that has it is 8 years old. His disease wasn't diagnosed until later and his symptoms haven't been as bad until recently. He has matter growing in his brain which is causing a speech impedement, lack of reason and judgement, and loss of balance. He is getting worse by the day. They don't expect him to live to see 10 years old. This really saddens me that my friend is going through this. She is not able to work because she is constantly going to doctors appointments and is on Medicaid. Her other 3 kids need to be tested for the disease but the only doctor close enough to her that does testing is in Atlanta and doesn't take Medicaid and it will cost $48,000 per kid just to be tested. Obviously she can't afford that. I've told her she should call around to the local news stations and newspapers to see if her family could get some kind of fund raiser going on or maybe even a telethon or something to try to gain the money. She's even thought of writing to Oprah about this since it's such a rare case. Sorry this has been such a long post. I've just been really worried about it. My questions to you all is have you ever known anyone who has gone through this, if so how did they handle it? And what are some ideas I could give her as ways to earn money to pay for the testing? Thanks for reading and any input. : )