I have a rare, degenerative, neurological condition called Friedreich's Ataxia. It is classified as a rare disease because it affects a small minority of the population. It is the most common form of inherited Ataxia though. Around 200,000 people in the United States are affected by FA (Source: [link]) and 1 in 50,000 people in Europe are believed to be affected. (Source: [link]).
It is a progressive, deteriorating disease that mainly affects the co-ordination of limbs but there are other common complications like heart problems, diabetes, scoliosis, hearing/speech/vision impairment and muscle weakness.
It is an inherited disease that is caused by a genetic mutation in gene FXN that codes for Frataxin which is a protein essential for the proper functioning of mitochondria. Mitochondria are like tiny little cellular power plants. (Source: [link]). The cause of the problem is a recessive gene which is why it is so rare. You only show symptoms if you have two recessive genes otherwise the Dominant (Unaffected) gene will be able to code the Frataxin protein perfectly well. I have made a diagram to better explain this:

The estimated carrier prevalence is just under 1%.
I was diagnosed with this five years ago when I was sixteen. When I was seventeen I read about people getting Stem Cell Treatment to help alleviate the effects. At the time I didn't really think about it, my attitude to life is: “I'll jump off that bridge when I get to it.” Anyway when I was seventeen I didn't have the same difficulty as I have now. Because it is a progressive problem with the nervous system the symptoms began much less severe than they are now.
Recently I have been looking at different Stem Cell treatments -they inject stem cells into your body which can repair a plethora of problems. Stem cells are like the raw building blocks that make up our body when we grow in the womb. The problem with the treatment is it is not available in most countries and it is also quite expensive $30,000 USD. Because of that it is not possible to get the treatment by any health insurance. Plus the fact I can’t get health insurance since it is already a diagnosed condition.
So I have decided to try and collect enough money to have some treatment. At present I tire quite easily and I find it impossible to walk unaided after three of four steps. Hopefully the treatment can change that. I don't expect to be able to run marathons or to even be able to run at all but it would be nice to be able to walk to the train station and just go somewhere different.
To help me to raise the money I am doing a couple things and your help would be greatly appreciated. So if you could please check this site out, thanks: [link]