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Hope for Brian: A Mother’s Journey Towards Her Son’s Diagnosis of A-T

On December 29, 2010, our beautiful baby boy Brian came into this world and I was instantly in love. For the next year, everything was bliss. He was reaching every milestone right on time and he filled our family with joy. We were complete.

When Brian began walking at 13 months, we noticed that he was unsteady and he often held his arms above his head for stability and balance. We talked about it and assumed, “it will come.” He was still happy, beautiful and full of energy. Brian started talking, but the speech was limited, we thought “it’s coming.” The drooling wasn’t slowing down, but we thought, “he’s still young.”

Finally, we realized that our little buddy needed some assistance.…

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Articles of Interest

Survival probability in ataxia telangiectasia

Ataxia telangiectasia is a rare, multiorgan neurodegenerative disorder with enhanced vulnerability to cancer and infection. Median survival in two large cohorts of patients with this disease, one prospective and one retrospective, is 25 and 19 years, with a wide range. Life expectancy does not correlate well with severity of neurological impairment.

Resources

A-T Children's Project

We fund international research in an effort to find life-improving therapies and a cure for ataxia-telangiectasia.

A-T Society

The A-T Society supports families to live their lives to the full and funds medical research.

Action for A-T

Action for A-T funds high quality peer reviewed medical research to speed up the process of identifying a cure for Ataxia Telangiectasia (A-T).

Wobbly Feet Foundation

Wobbly Feet Foundation, Inc. was established in 2009 after learning of our son, Connor’s diagnosis, 1 month before his 3rd birthday. The news was devastating; however, we knew we needed to raise as much awareness as we could in order to help those already in the flight continue the needed medical research towards finding a treatment and/or a cure. A-T is a rare genetic condition and therefore is not on the forefront of the medical community. It is through grass roots fundraising and generous corporate sponsorship that we are able to push A-T into the main-stream of medical research and keep it there.

NORD

Ataxia telangiectasia (AT) is a complex genetic neurodegenerative disorder that may become apparent during infancy or early childhood. The disorder is characterized by progressively impaired coordination of voluntary movements (ataxia), the development of reddish lesions of the skin and mucous membranes due to permanent widening of groups of blood vessels (telangiectasia), and impaired functioning of the immune system (i.e., cellular and humoral immunodeficiency), resulting in increased susceptibility to upper and lower respiratory infections...