Hello T-family. Before i begin let me make this clear that im not companin or trying to raise funds in any way. I am trying to raise awareness about a devistating disease known as Friedreich’s ataxia which my best friend has and how life has been since he was first diognosed in 5th grade. Please visit this site for detailed information and your support http://www.frda.org/
This is a genetic disorder where there is a mutation in our genetic code. To put it briefly, this mutation causes insufficient production of a newly discovered protein “Frataxin” (named after the disease). This in turn, causes extremely high levels of iron inside the cells mitochondria. What this does is causes an uproar in FREE RADICALS. I hope that “free radicals” sparked your interest, as these are a problem for all bodybuilders.
Friedreich’s ataxia is found at about 5-15 years old. It is caused by a recessive trait passed down by both parents. It causes continual breakdown of motor units, muscle tissue, causes slurred speech, loss in body function, and a shortened lifespan that usually only lasts into the young adult years.
I dont want to explain any more scientific details, as you can find that on the site, i’d rather give you a description of life up until this point. Keith was like any other child. We grew up together, rode bikes, played capture the flag on the playground, nothing seemed out of the ordinary. It was around 3rd to 4th that indications of the disease were showing. He lost his balance every once in a while. Then he was diagnosed. After that Keith was never allowed to ride his bike. I didn’t really understand why at the time. His parents told us all about what was happening and going to happen, we didn’t pay much attention. The first difference that occured was Keith had to wear ankle weights. He could still run and play, life wasn’t much differnt. Then the beginning of middleschool came, and his condition worsened. Off came the weights, and on came a plastic back brace. Molded to his midsection. As time went on, bigger and bigger braces went on. We went on vacations together, i look back and can’t comprehend the changes. Last year was probably the worst time. You see the older the person gets, the less function they have. So after last summer, Keith’s friends and I have to hold his arms tight as he walks. After fall, things took to the final step. He had to endure surgery, a metal rod was to be welded to his spine, and he would have to be in a wheelchair permanently. He stayed in the hospital for a week, and had to stay home from school for two months in order to recouperate. Everyday we’d visit keith in the hospital. It was a very hard site. He is currently 17. Keith at this point still has normal speech, but soon enough it will go. What is the worst g-d damn thing about this horrible disease is that even though his body withers away, his mind remains completely intact. No mental retardation, no memory loss, he has to witness everything, and go through his life knowing what has happened, and what will eventually happen to him. I can’t fathom what must have been going through his thoughts 24-7 his entire life, and i never will. All i know is that no one should have to fathom those feelings. no one.
At this point there is no treatments and no cure for Fredrich’s ataxia. But there is hope. This field has been attracting more and more scientists, and clinical trials will shed new light on this disease. The more people find out about this disease the sooner the cure. I know it CAN be cured.
Keith once told me in middle school, that in 10 years he thinks they’ll find a cure. I swear on my own T-life that will happen, and his families sacrifice will not be in vain.
http://www.frda.org/education/message.htm#numbers
Thank you for your time and interest.
Sincerely,
Ben Glasman (GlassMan)