Family fight for cure for child born with fatal disease (From Croydon Guardian)

Family hope to find cure for Purley child Brae Sewell diagnosed with fatal disease

6:00am Saturday 15th September 2012 in Local news By Andrew Bloss

Family and friends of a young boy with a rare genetic disorder have launched a fundraising effort to support him and help find a cure.

Brae Sewell, three, of Purley, had ataxia-telangiectasia (A-T) diagnosed in March, and on Saturday his family held their first fundraiser for the youngster, raising more than £2,000 for the charity A-T Society.

A-T is a rare degenerative condition that causes increasingly severe disability and premature death.

Children with A-T are unlikely to live beyond their 20s. There is currently no cure.

Hundreds of family and friends attended the event at the Sir Philip Game Recreation Centre.

Manchester United defender Rio Ferdinand donated a signed shirt along with Chelsea Football Club who sent a shirt signed by the team.

Both items went into a charity auction. Brian Sewell and Siobhan Kelly, Brae’s parents, said it had been a tough year for their family following his diagnosis.

Mr Sewell said: “It has been very up and down.

“This isn’t a disease where it stays the same.

“Brae is deteriorating and that makes it hard for us.

“He will need full time care soon so either myself or Siobhan will have to give up one of our jobs.

“The support from everybody has been great. Without family and friends it would have been even more difficult for all of us. I don’t know how to thank them.

“Brae at the moment is oblivious to what it is going to happen to him.

“That is what makes it hard. We will have to do some more explaining.

“He will wonder why he won’t be able to walk.”

Miss Kelly said: “We try to think positively. They are trying to find a cure and if they did find one that would of course be amazing.

“We want to raise awareness about A-T by doing these fundraisers, but the last couple of months have been tough.”

Brae has been nominated for the Croydon Champions Child of Courage award.