So, in my (lengthy) post about my trip to Disneyland, which you can read here, I “introduced” you to Alex and briefly mentioned that I participated in Disney’s Dumbo Double Dare Challenge as part of the A-T Children’s project. I also mentioned that I would probably do a post just on them, and, well, here it is!
When I first signed up to do the race with them, I’m not going to lie, it’s because I REALLY wanted to do the race and it had already sold out. Then, I read more about them and knew I HAD to run for them. My entire experience with them has done nothing but reaffirm that.
First up, the basics: what is AT? A-T stands for Ataxia-Telangiectasia (don’t even ask me to try and pronounce that!). It’s a disease that only affects children (heart breaking already, right?) It is a progressive, degenerative, multi-system disease that pretty much affects the entire body. The children with A-T don’t start to show signs of it until they are about 2 years old. The cerebellum is affected which leads to the lack of muscle control and confines the patient to a wheelchair. As the disease gets worse, they will also lose their ability to write, speaking gets more difficult and reading becomes almost impossible because their eye movements become difficult to control. It also affects their immune system. In about 70% of the children, there in immunodeficiency that will bring recurrent respiratory infections, and these infections can become life threatening. The children lack the natural infection fighting agents in their blood, which makes them more susceptible to lung infections and that do not respond to typical antibiotic treatments. The weakened immune system, plus the progression of the ataxia can lead to pneumonia, which is a common cause of death. They are also more susceptible to cancer, but because of the diseases, they have an extreme sensitivity to radiation, which means they cannot receive the typical treatment given to most cancer patients. Some of the other features of this disease that could affect these children? Mild diabetes mellitus, premature graying of the hair, difficulty swallowing causing choking and/or drooling and slowed growth. BUT, even though A-T is a multi-system disorder, the children afflicted have and maintain normal or even above-normal intelligence. Their dispositions seem to remain equable and help them to maintain a healthy outlook on life despite the progression of their disabilities.
Ataxia-telangiectasia respects no racial, economic, geographic or education barriers. Both males and females are equally affected. Epidemiologists estimate the frequency of A-T as 1 in 40,000 births. But it is believed that many children with A-T, particularly those who die at a young age, are never properly diagnosed. Therefore, this disease may actually be much more common.
As if this all isn’t horrific enough, A-T is presently incurable and unrelenting. If they are lucky enough not to develop cancer, most A-T children are dependent on wheelchairs by the age of ten, not because their muscles are too weak, but because they cannot control them. Later, A-T patients usually die from respiratory failure or cancer by their teens or early twenties. A few A-T patients live into their forties, but they are extremely rare. There is no cure for A-T, and there is currently no way to slow the progression of the disease. At this time, treatments are directed only toward partially alleviating some symptoms as they appear. Because A-T is a rare, “orphan” disease, very little research data is available on pharmaceutical therapies that may aid these children. Physical, occupational and speech therapy are used to help maintain flexibility, gamma-globulin injections help supplement the immune systems of A-T patients, and high-dose vitamin regimes are being undertaken with some moderate results.
Are you ready to run for them yet?
As if the horrors of the disease isn’t enough to convince you to want to help, the experience as a runner, should be seal the deal. First up, the minimum amount required to raise is less than half as much as other charities require. They ask that you raise $600 (this amount may vary depending on the race, but this was my requirement for the Dumbo). Obviously I would want to exceed that expectation, but let’s face reality, it’s not always easy to raise money.
You also feel like you are running for a person, a cause, not just a company. I was in constant contact with one of the heads of the charity. As this was my first race through a charity, I was nervous about everything and had tons of questions. Aletia Patterson, answered every single one of them in an extremely friendly and patient manner.
When you register, they assign you to a team. This is team is for a child who currently has or passed away from the disease. I was on Team Randy and Alex. Randy has passed away and Alex is his 3 year old cousin. The night before the half marathon, the AT Children’s project had a pasta dinner. At this dinner, you sat at the table of the family of the team you were running for. I got to meet Alex and his parents, as well as Randy’s parents. It’s indescribable meeting the people you are running for. Alex’s mom is pregnant and due this month. When I asked questions about the baby (they are letting if its a boy or a girl be a surprise), his father volunteered the information that at a few months old they can have the test to see if their baby has AT as well. That broke my heart. I hadn’t asked about it. But the fact that that’s something they have to worry about, they have to think about. As if it isn’t hard enough having one child with this disease, to have to worry/thinking about their unborn child having it too?
At the party, they had a band (the family of a child who had passed away from it) and a dance floor. All the kids, whether already confined to the wheelchair or not, were on the dance floor boogieing down to the best their muscle control would allow. There was this one little girl that Doug and I couldn’t take our eyes off of because she had the largest, most beautiful and contagious smile. And that’s when reality hit and I got a little teary-eyed.
The intimacy of this charity, where everyone knows each other, helps each other, is thankful for each other…I’m not doing the description of participating in it justice.
Obviously, you can donate or fund raise at any time. There are also numerous races you can sign up for. For you Disney runners, you can run for A-T as part of both half marathon weekends in Disneyland and for the WDW marathon weekend (they are currently sold out for the 2014 Dopey, but there are still openings for the 10K, Half, Full and Goofy – see here). I have already decided that when I do the Goofy in 2015, I’m running for them, as well as any future Disneyland races I may do.
In 2012, they raised $150,000 total. The Dumbo Double Dare, they raised $255,000 alone. The difference you can make in their fundraising is pretty significant.
If you have any othe