Family hope AT Society research can save little Taunton schoolgirl Gracie (From This is The West Country)
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Family hope AT Society research can save little Taunton schoolgirl Gracie
THE family of a seven-year-old girl with a rare “time-bomb” condition hope a research project could buy her more time.
Gracie Potter will die young unless a cure is found for ataxia-telangiectasia, which has resulted in her needing a wheelchair and regular treatment.
Her low immune system means even a cold is serious, while she nearly died from chickenpox, is at increased risk of cancer and can only walk short distances with a frame.
Her mother, Sheryl, said: “A-T severely shortens people's lives.
“If Gracie catches a cold, it's ten times worse and when she got chickenpox, the medicine gave her kidney failure and it was touch and go.
“A-T affects her chest and lungs which could kill her.
“We're living with a ticking time-bomb. She's unlikely to live much past her teens.
“Instead of watching our child grow up, learn new skills and become more independent, we're watching her slowly deteriorate and there's nothing we can do about it.”
Gracie has A-T due to a cruel accident of nature - Sheryl and her husband, Martin, of Bacon Drive, both carry the same uncommon gene mutation, the only way their daughter could have the condition.
It is believed she is the only person in the Taunton area with A-T and one of just 150 nationwide.
Sheryl, whose risk of developing breast cancer because of the faulty gene is eight times higher than average, said: “Our life stopped when we discovered Gracie had A-T.
“Everything seemed normal until she tried to walk and kept falling over.
“She suffers from fatigue, but gets on with life and mixes in with her friends.
“Her school friends did some fundraising for a seat with games for her to play. She loves horse riding at the Conquest Centre (for disabled riders at Norton Fitzwarren).”
The AT Society is funding research at the Gurdon Institute, Cambridge, in the hope of improving the life quality of children with A-T or eventually finding a cure.
Sheryl said: “We're hoping there's a breakthrough before it's too late for Gracie.”
Gracie and Sheryl are fundraising for the AT Society at Asda Taunton this Saturday (June 15).
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