Family Rallies for Support of Son with Ataxia Telangiectasia
August 24, 2013
We realized from early on that something just wasn’t right. Two and a half years of poking and prodding, guessing and no answer, we had a name… Connor was diagnosed with Ataxia Telangiectasia (A-T) on August 14, 2009–the worst day of our lives.
Connor looks on the outside like a typical (almost!) 7-year old-boy. He is active, goes to school, loves superhero’s and his dog, Rocket. He enjoys nothing more than playing with his buddies battling Beyblades and playing video games with his dad, but we know that, in time, A-T will slowly, manipulatively take this away from him so we FIGHT! We fight EVERYDAY to live life to the fullest and to find a cure!
A-T is a progressive neurodegenerative condition which slowly degenerates the Cerebellum, the motor center of the brain. This is devastating however not the only symptom. A-T children are 1000% more at risk for blood cancers than their peers, suffer from immune deficiencies, often needing weekly/monthly immune infusions, and endure respiratory complications from the smallest of “common colds.” Children diagnosed typically need an walker or wheelchair by their 10th birthday and often do not see their 20th.
We have a great support system including many of the 500 A-T families from around the world and are blessed with a national foundation the A-T Children’s Project all who strive daily for a common goal…a cure!
My husband and I started Wobbly Feet as our own local way to fundraise within our community. With Wobbly Feet we raise money and then partner with the A-T Children’s Project on medical research. We have also launched our own grant program for A-T families which will aid in medical expenses for treatment and equipment as well as help with home repairs to accommodate families for an improvement in quality of life.
We will never give up!
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