I'm posting this for a family from our ward...
In September 2005, Liam, was diagnosed with a rare, genetic, neuro-degenerative disease called Ataxia Telangiectasia or A-T for short.
What Is A-T?
A Multi-system Disease...
Ataxia-telangiectasia, or "A-T," is a progressive, degenerative disease that affects a startling variety of body systems. Children with A-T appear normal at birth, and the first signs of the disease usually appear during the second year of life. These first signs are usually a "wobbly" lack of balance and slurred speech caused by "ataxia," which means a lack of muscle control.
Ataxia...
The onset of this ataxia marks the beginning of progressive degeneration of a part of the brain, known as the cerebellum, that gradually leads to a general lack of muscle control, and eventually confines the patient to a wheelchair. Because of the worsening ataxia, children with A-T lose their ability to write, and speech also becomes slowed and slurred. Even reading eventually becomes impossible as eye movements become difficult to control.
Telangiectasia...
Soon after the onset of the ataxia, the A-T patient usually shows another clinical hallmark of A-T: "telangiectasia," or tiny red "spider" veins which appear in the corners of the eyes or on the surface of the ears and cheeks exposed to sunlight. Although these telangiectasia are seemingly harmless, their unique appearance together with ataxia is what led to naming this disease "ataxia-telangiectasia."
Prognosis...
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.
What treatments are available?
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 theyappear. 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.
How We Can Help...
Liam's 3rd grade class is having a service project for Liam. They are having "Tacky Tuesday" on Tuesday May 4th. For a minimum donation of $1.00 students (and staff) can dress in their tackiest clothes. All money raised will go to the A-T Children's Project. The class that collects the most money will win a pizza party.
Isn't that awesome?!?!
Do you want to participate too?
On May 4th if you are interested in participating just log on to the A-T Children's Project website & you can donate too! As much or as little as you like. Do it in Liam's name! As an added incentive I will remind you that Liam's birthday is coming up too. He will be 9 years old on May 7th. So there you go what better gift could a person give another person than "life". For that is what you would be giving him. Money to the A-T Children's Project goes toward life improving therapies & a cure for all A-T kids.
BUT MY IDEA DOESN'T STOP THERE!
Not only should you donate but I am encouraging all of you who read my blog too, cowandsalltiedup.blogspot.com in honor of Liam & his impending 9th bday, post about this wonderful opportunity on your blogs as well. Let's see how many of you are actually reading this blog & how many of you would want people to help your child should they have an incurable disease.
They deserve a chance to live!
Please, do a special post on your blog leading up to the May 4th fundraiser at his school. Don't forget to grab the A-T Children's Project button, that I made, on my blog cowandsalltiedup.blogspot.com so that you can then place it on your blog.
Help spread the word!
