From our son and his wife: Josh & Brittany Capps …
In July of 2021 our Audrey Jane was diagnosed with Ataxia -Telangiectasia (A-T). A-T is a neurodegenerative genetic disorder that typically impairs movement and coordination, weakens the immune system, and causes an increased risk for cancer. A-T is rare (approx 500 known cases in the U.S.) and often comes with many other physical and medical challenges. We have been told that kids with A-T typically need a wheelchair by the age of ten and that life expectancy is limited by the disorder due to the impaired immune system and risk for cancer. There is currently no cure for A-T.
We have been to the Johns Hopkins A-T Clinic in Baltimore and we have a good team of doctors on our side locally as well. We have been connected with the AT Children’s Project, a nonprofit formed/supported by families affected by A-T. They are doing everything they can to fund research and trials and find a cure.
We have learned that every child with A-T is so different in their individual symptoms and know of some who have lived into their 30s and even early 40s. Intellect is typically not affected which is a blessing. Only time will tell how this disorder will affect our baby girl.
Right now she is 3, a bit wobbly and off balance (she has been since she started walking at 15 months), but she is happy and smart and has a zeal for life like no other!
We have also been told that kids with A-T typically start losing physical abilities step by step between ages (4-8). We are in a race against time to find a cure for our Audrey Jane.