local paper story on Billy

Courageous Billy lives life to the fullest

Like most 10-year-olds Billy Hosking likes playing on his computer, having fun with his three siblings and attending Cub Scouts with his friends.
But life for the Trinity College Gawler River student changed last year when he was diagnosed with Friedreich Ataxia (FA), a rare genetic neurological disease causing progressive physical deterioration.
There is no cure for the condition, which already affects his day-to-day life considerably.
“For one, I have to use a walking stick and I use a computer a lot at school for things that are normally written,” the Gawler West youngster said.
“I’m fairly physically slow walking and I can’t do long distance walks obviously.”
But just five minutes in the company of Billy reveals a fighting spirit and refusal to accept his fate.
Mother Laurel admits to feeling both “grief and relief” when her son was finally diagnosed with FA, after suspecting he had a medical condition from the age of two.
“He’s always had bad co-ordination problems, always been very clutsy and clumsy, and by the time he was six, his legs would just give way when standing still, now that’s not normal,” she said.
“We basically had this one neurologist who closed the file and said, ‘tell me your story’…two tests later we knew.
“There was an incredible sense of grief, because there is a sense of loss of what he won’t see, of what he won’t be able to do, but at the same time there was relief that finally we had some answers.”
Upon learning Billy’s diagnosis, Laurel and husband Wes were shocked to discover a total lack of support for people with FA in South Australia.
Laurel contacted the Friedreich Ataxia Research Association (FARA) in Melbourne, and was impressed by its research into a cure.
“But FARA had never met anyone from South Australia with FA, so I came back here and had this need to do something,” she said.
“I was seeing doctors and specialists all over Adelaide and none of them knew anything.
“I’m telling them what tests they need to run, I’m telling them what needs to be done, but this is wrong, I have to be a mum first.”
Laurel has since set up a support group for people with FA, encouraging them to register with
FARA for upcoming medication trials.She has also organised a gala ball and silent auction to increase awareness of the disease and raise much needed funds for research into a cure.
“The really scary thing about FA is one in 90 people carry the gene – my husband and I didn’t know that we were carriers,” she said.
“Really the sun doesn’t set on research, all around the world it’s being done and why is it being done, because they believe they can beat it.
“We have bad days, we have what we call Friedreich’s days, but other days we just fight and we won’t give up.”
The FARA Gala Ball takes place on Saturday, August 16 at The Lakes Resort, West Lakes.
Guest speaker on the night will be Martin Delatycki, director of the Bruce Lefroy Centre for Genetic Health, with entertainment from the band Flaming Sambucas.
Tickets cost $150 each, or $1400 for a table of 10. To make a booking, call Laurel on 0420 498 963.