CALLING ALL RUNNERS:
Join up with us again at Disneyland as we work together to raise funds to find a cure! Each year our team has grown. Let's make this the best year yet with new runners and higher donations!
It's worth every effort. As we live each day with the effects of A-T, we are grateful for each supporter and friend. You help provide hope and purpose for our journey.
Here is what A-T is like in Cathryn's own words:
"Imagine the grace, agility, strength, skill, and dedication of a ballerina, gymnast, figure skater. These were my ambitions, hopes and plans, my desires, my passions, my dreams--until a very rare disease took control of my body and robbed me of the abilities I needed to pursue my agenda.
I now know I will never have those talents like I once hoped for, but my dreams are not dead. I hold them in my heart and wait for the day I will dance before the throne of God.
I was born in Pasadena, California, on July 1, 1991. As I grew I took lots of dance lessons and piano lessons. I wanted to be a famous ballerina. To me life seemed to be going smoothly until I was 8 years old. My parents, though, were convinced something wasn’t right. I always had difficulty balancing; they hoped I would grow out of it, but I was steadily getting worse. I started having trouble with school more than ever. I was unable to remember facts I had already learned. I often staggered as if I were drunk. Something was desperately wrong.
After numerous doctor visits and blood tests we learned that I had this disease called A-T. It is rare and deadly and has no cure.
That December I had surgery that saved my life. I had a feeding tube put in because I was so malnourished I was considered a “failure to thrive.”
A-T is actually called ataxia-telangiectasia. It affects the cerebellum and mimics cerebral-palsy, muscular-dystrophy, cystic-fibrosis and cancer. “Ataxia” refers to wobbliness and lack of muscle control. Most kids with A-T have to use a wheelchair at ten years of age; some can still walk or use a walker. A-T limits their ability to swallow and many – like me -- need a feeding tube. Some kids with A-T require a one-on-one aide for school. Lack of muscle control is responsible for making it difficult to read and write so most kids use a computer.
The “telangiectasias” are little veins that appear on the surface of the skin, and the eyes.
A-T causes immunodeficiency. My immunologist prescribes monthly IVIG therapy for me which helps my body fight infection. The combination of a weakened immune system and the progressive ataxia can ultimately lead to pneumonia as a common cause of death.
A-T cells are more likely than normal cells to suffer damage when exposed to radiation. So extra care is necessary to avoid harm from the sun and X-rays should be avoided. A-T increases the risk of diabetes and cancer. Life expectancy is less than 30 years.
Why me? I don‘t know all the answers, but this I do know: it was God’s will. He planned it. He wanted it to happen for His own purposes. I love Him and trust Him.He has proven His love for me. I have peace of heart and of mind knowing these things to be true."