After Unexpected Rare Diagnosis, Parents Decide to Star in Film Series for Awareness of Ataxia Telangiectasia

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 (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.
Read more: http://www.croydonadvertiser.co.uk/Family-star-society-s-film-rare-disease/story-27600863-detail/story.html#ixzz3jSWdt5ZH