Stamford family hopes to raise rare disease awareness to help son

<p>Parents of a boy suffering from a rare disease in Stamford are sharing their battle in the hope that their story encourages people to help them find a cure.</p>

News 12 Staff

Feb 25, 2018, 6:09 PM

Updated 2,282 days ago

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Parents of a boy suffering from a rare disease in Stamford are sharing their battle in the hope that their story encourages people to help them find a cure.
Christopher Barker, 3, was diagnosed with a very rare and fatal genetic disease called Ataxia-telangiectasia in June of 2017.
Christopher's mother Katia says that there are currently less than 500 families in the United States affected by the disease.
"This is a disease that combines the worst symptoms of muscular dystrophy, cystic fibrosis, immunodeficiencies," she says.
Katia and her husband David say they it’s hard to believe that their son will most likely be confined to a wheelchair by the time he’s 10.  They say most people with AT do not live past their early 20s.
While there is no current cure for the disease, the FDA approved treatment for the disease last year – gene therapy trials are set to begin soon.
The Parkers are hoping Christopher may be a candidate.
They hope people will donate to the AT Children’s Project to help families like theirs find a cure.


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