One determined young man!

You may or may have noticed in my favorite blogs to the left side of the page that there is one that seems oddly out of place. I had meant to post about it earlier, but just never did for whatever reason.

The one at the bottom of the list is called "Ride Ataxia" and it is the blog of a young man on a tricycle ride from southern California to Memphis, TN. When he gets to Memphis, he will be attending a meeting of the National Ataxia Research Alliance (NARA).

What makes this ride amazing is that this young man is affected by a disease called Friedreich's Ataxia. FA, as it is more commonly referred to, is an inherited genetic disease for which there is no real treatment or cure. It is very rare as only 1 out of an approximated 100,000 people have it. This is a slowly progressing disease in which the cells of the body lack a protien which helps the transportation of iron out of the cells. Over time there becomes nerve damage and the person begins to lose their ability to balance and coordinate movement. Most are diagnosed as children between the ages of 5 and 13. Many are wheelchair bound by the time they are out of high school. It can also affect the heart muscle and cause it to become weak. Most people with FA don't live to see 40. This young man's ride is to help raise awareness of the disease, and also to raise funds for research. Research in this field is more difficult because of a few reasons. First the genetic code that causes the disease was only found about 15 years (thanks to the Human Genome Project). Also, the more rare the disease, the little money there is for research. People simply don't know the disease exists.

So why am I posting about this? Is it simply an inspirational story to make people feel good? No, the reason that I am posting this is because it is one of my missions in life to raise awareness about this disease, too. Why? Because my niece Allison also has this disease. Allison will be 16 in May. She was diagnosed at the age of 9 after the doctor thought her heart "sounded funny" during a routine school physical. After further testing, FA was the diagnosis. We were devastated. I decided in those first few days that there was a difference between being "reactive" and being "proactive" and that to be of any help to Alli, I needed to be "proactive". That to me is the difference between being upset and depressed and feeling helpless and doing what I can to help raise awareness and, when I can, to help fund research. So this became one of my life goals, to always do what I can in this area. Not only because I love my niece, but because these kids deserve a cure just as much as those with more commonly recognized diseases. That said, you may see me post from time to time on this subject.

Allison is doing well for now. She does require the use of a wheelchair at school and when she is going to be out for extended periods of time. This is partially due to a loss of balance and coordination and partially due to her weakened heart. She gets tired very easily. My sister and her family moved into a different house about a year ago so that Alli no longer had to deal with stairs on a daily basis. They were becoming a little too dangerous for her. She also cannot be left alone in case she should suddenly go into cardiac arrest (which could happen at any time). Alli doesn't talk much about the FA, I think she just wants to live her life each day and take things as they come. I wish I had a more recent picture of Alli to post, but my sister doesn't have a digital camera, so therefore I don't get a whole heck of a lot of pictures with the girls, but here is an old one of her and my husband playing checkers a couple of years ago.


amandajean said...

that is an interesting site...I had checked it out a few weeks back and again today. it is an amazing journey he is making.

Holly said...

Thanks for your dedication to raising awareness of FA. I used to work at a pediatric hospital, and I saw what a great struggle it was to raise awareness and funds for the many, many lesser-known diseases that afflict so many children. You are doing good work!