Aaron Jordan, who is one of only 1000 people worldwide with Ataxia Telangiectasia, with his mum Brenda and sister Chloe hopes a Facebook campaign might get him to see idol Ellen DeGeneres. Picture: Peter Lorimer Source: The Daily Telegraph
A RARE disorder means Aaron Jordan can barely talk but the Newcastle teenager's dream of meeting his idol Ellen DeGeneres may yet come true thanks to more than 57,000 Facebook users who are speaking for him.
The 17-year-old is one of just 1000 people worldwide with Ataxia Telangiectasia, or A-T, an incurable degenerative disorder that has consigned him to a wheelchair, rendering him unable to walk, talk, read or write, and attacking his immune system.
Aaron hopes to raise awareness for the disorder, described as being like a combination of cystic fibrosis, muscular dystrophy, cerebral palsy, cancer and leukaemia, by meeting Ellen DeGeneres after she arrived in Sydney today.
The teen's heartfelt plea to the talkshow host, posted to Facebook by his mother Brenda and older sister Chloe, has gone viral, being shared and liked more than 57,600 times in the last few weeks.
"When we first set it up and it went viral over that first three days we couldn't believe the responses we got, all the support and the well wishes we got, it was just overwhelming,'' mum Brenda said.
"We just hope that Ellen will see it and consider meeting him and sitting down and talking with us so we can explain the disorder to her.
"We need to have someone who's got a lot of pull and a lot of know-how to spread the awareness and to help with fundraising, and Ellen is that.''
Queensland Royal Children's Hospital neurologist Dr Kate Sinclair, who is head of the only clinic in the southern hemisphere for children with A-T, said the devastating disorder affected between 35 and 50 children in Australia who would likely not make it past their late teens.
"Having a child who you think they're going to grow up to be normal and suddenly, at age two or three you're told their little bit of wobbliness means they have a life threatening condition, they're probably going to get cancer, they're going to end up in a wheelchair at the age of eight and die in their teens, that's just absolutely catastrophic,'' she said.
Dr Sinclair said fundraising was desperately needed for research into A-T, which has implications for other diseases such as breast and prostate cancer.
"This cellular-based research we're doing is really helping other disorders, we are learning so much about cancer, HIV, ageing, we're learning so much from this one condition,'' she said.
Ms Jordan hopes DeGeneres will be able to help give A-T the same profile here as it has in America, where celebrity Hollywood couple Ben Affleck and Jennifer Garner are ambassadors for the disorder.
While the family is yet to hear from the comedian or her producers they still have time to meet the talkshow host with DeGeneres tweeting that she was planning something special for her time in Sydney:
"I've got big plans for Sydney on Saturday. Don't miss it."
DeGeneres and her wife Portia de Rossi delayed their weekend visit to Australia after DeGeneres came down with a severe bout of the flu.
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