TWO brave parents are starring in a series of short films about the rare, life-shortening genetic condition from which their young son suffers.
There was nothing that could have prepared Brian Sewell and Siobhan Kelly for the life-changing moment Brae, one of their twin sons, was diagnosed with ataxia telangiectasia
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(AT).
When Brae was aged just three, his parents were given the heart-breaking news their son is unlikely to live past the age of 26.
Now, the family are hoping that by appearing in the film, created by Antonia Hunter on behalf of the AT Society, they can spread awareness of the rare disease.
The AT Society provides support and information to sufferers and their families.
AT is a debilitating disease which causes severe disability, weakens the immune system and prevents the repair of broken DNA, increasing the risk of cancer. It gets progressively worse, and many sufferers are wheelchair-bound by the age of ten.
Bus driver Brian and NHS clerical officer Siobhan, from Purley, may be forced to give up work to look after Brae as his condition deteriorates.
The condition makes it harder for Brae to perform simple tasks like getting dressed or going to the toilet. Although identical in appearance, Brae's twin brother Broghan is unaffected and is a promising young footballer at the Chelsea FC academy.
"Brae sometimes dribbles and gets tired quickly but he is determined not to give up, and wants to do whatever Broghan is doing," said mum Siobhan.
Siobhan detected something was wrong with Brae after he took his first steps.
Broghan started walking after his first birthday, but his parents noticed that he was dragging his left leg "almost as if he was limping", and took him to Mayday Hospital. But the doctors put it down to Brae developing later than usual. However, Siobhan wanted a second opinion.
"As a mum, you know there's something wrong," she said.
They were referred to St George's Hospital, Tooting, where doctors performed blood tests and chromosomes tests before diagnosing Brae with mild cerebral palsy.
After Brae was discharged, the doctors did more tests and two weeks later called the family back for another appointment, when the family were told that Brae has AT.
"Nobody wanted to look me in my face, whereas before all the doctors would greet and fuss over the twins," Siohan said.
Siobhan recalled feeling as though they were "mourning" in the first few days after receiving the news. It took support from the AT Society as well as family and friends to help them come to terms with Brae's condition.
The society puts on family weekends once a year for children suffering with AT and their families. Siobhan holds fundraisers of her own each year and is organising her fourth open family fun day for September 5 at the Sir Phillips Game Centre, Addiscombe from 3pm.
In the last four years, Siobhan and Brian have raised over £10,000 towards funding for research but more is still needed if a breakthrough is to be made.
View the film by visiting www.atsociety.org.uk
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