AWARENESS: Aaron Jordan, pictured with his mum Brenda, may have the chance to meet talkshow star Ellen DeGeneres when she visits Australia next month.HE may be a man of few words but Aaron Jordan’s family guarantee the 17-year-old’s story will touch the heart of US talk show host Ellen DeGeneres.
The Warabrook teenager suffers from a severe neurodegenerative disease known as Ataxia Telangiectasia, so rare there are only 35known ‘‘AT families’’ in Australia.
The condition is essentially like having five major disorders in one, leaving the sufferer without an immune system and about 1000times more susceptible to cancer or leukaemia.
Confined to a wheelchair since he was seven, the disease has affected Aaron’s speech and muscle growth but not his ‘‘contagious’’ smile.
‘‘There is no cure and because it is considered an ‘orphan disease’ funding and research are significantly lacking and desperately needed,’’ his mother, Brenda Jordan, told the Newcastle Herald.
In a bid to create awareness and find a celebrity to champion the disease, Mrs Jordan and Aaron’s sister Chloe posted a photograph of the teenager and some words about his battle on The Ellen DeGeneres Show’s Facebook page earlier this month.
The response floored the Jordan family, with the post receiving more than 50,000 ‘‘likes’’ from Facebook users, while thousands more sent messages of support.
Mrs Jordan said at the very least the post and photograph introduced about 50,000people to the debilitating disease.
But she hoped her son would get the chance to meet Ellen, known for her philanthropy and charity work, when she brings her show to Australia for the first time on March 15.
‘‘We realise that Ellen gets a lot of requests like this but what sets Aaron’s story apart is that his condition is so rare and very few people know anything about it,’’ Mrs Jordan said. ‘‘Also, any research that is undertaken could help with so many other diseases out there.
‘‘Everybody that knows Aaron just loves his smile and I think that’s all Ellen will need to see and she will be on board.’’
TV personality Ellen will visit Australia on March 15, and Aaron’s mum hopes he’ll be chosen to go on air.