S.M.A. is the #1 Genetic Killer of children under the age of 2, it is inherited and often a fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, swallowing, head and neck control.
Who is affected by this disease?
* 1 in every 40 people carries the gene that causes S.M.A.
* If two carriers have children, the chance that their offspring will have some form of S.M.A. is 1 in 4.
* S.M.A. can affect all racial and ethnic groups.
* 50% of children diagnosed before the age of 2 will die
* S.M.A. can strike anyone at any age
What are the different forms of S.M.A.?
* Type 1: The most severe form striking children between birth and six months of age. Children with this type show a lack of normal movement and motor development, including the ability to sit unaided, a weak cry, trouble breathing, sucking and swallowing.
* Type 2: Intermediate form of the disease has symptoms generally beginning between the ages of 7 and 18 months. Children with Type 2 may be able to sit unaided and some may even learn to stand with support. Feeding and swallowing difficulties are generally not associated with this type however many are extremely susceptible to respiratory infections. Most type 2 patients use electric wheelchairs to provide mobility.
* Type 3: Mildest form of childhood-onset S.M.A. Some patients are able to stand with this type but weakness is prevalent and tends to eventually sentence it’s victims to a wheelchair. Type 3 usually strikes children after the age of 18 months but can surface even in adulthood
* Type 4: The adult form of the disease in which symptoms tend to begin after age 35 and show in the hands, feet, and tongue then spreading to other areas of the body.
A.J. Factor's 9 year old daughter, Sierra Journey Factor has Spinal Muscular Atrophy (known as S.M.A.) Sierra has been the poster child for Make a Wish, and was also a poster child for the Children’s Miracle Network on 10,000 Thank you cards. My loving daughter is the most positive person I know. She has done photo shoots for "Give Kids the World", and even worked with Barney at Universal Studios! She is always looking forward to what is coming next! Adding to Sierra's already lengthy list of hardships, she once again spent her birthday, January 3rd 2008, in Arnold Palmer hospital. As you can imagine, this was a tremendous disappointment to us all. It has become routine for her to spend one to two months out of each year in the hospital. In spite of these hurdles, she remains a very cheerful person, and takes pride in making sure that being in the hospital during Christmas is the best it can be for the other children. She said, "It was no fun to be here on my birthday, but imagine how bad would it stink to be in here on Christmas!" This is when Sierra really decided she had to start a project of her own. She has two donated storage units that are currently filling up with toys for all the kids at Arnold Palmer Hospital and will be delivered there Christmas morning 2010. Sierra's 2008 Christmas project was a great success & her goals are to have even more toys This Year! She recently had the opportunity to flip the coin at an Orlando Predators game and was so excited about the cheer she got. We want a chance to be heard so we can help families who are not dealing well with having a child or loved one with this disease. So, our family started a race team where I, her father, drive to spread the word and educate about S.M.A. with the hopes of utilizing a public platform, becoming a national voice for all to hear. With everything my daughter faces she gives me inspiration to keep my own dreams alive, which is primarily to educate others through doing something I love, racing. After the family has spent nearly all of our savings to educate people we have never got our word much past central Florida. This disease can be prevented with family planning and genetic counseling and there are lots of people out there that are unaware of this. Now is truly the time when we all need to reach our deepest, for without the assistance of sponsors, we will eventually run out of options. At S.M.A. Motorsports Inc. we truly look forward to working with any potential sponsors, small and large alike, for certainly together, this is a race we can, and will, win!
