TAMWORTH motorcyclists touched by a mum’s fight for her baby who has a terminal illness have organised a fundraiser in August.
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The riders, spearheaded by Troy Windle, are having a run and tattoo show on August 23.
The run will depart from Rex Motors Service Station, on the corner of Robert St and Werris Creek Rd, Tamworth at 11am.
The tattoo competition will be held at 2pm at The Locomotive Hotel in Tamworth.
There is a $20 registration fee for show participants.
It’s all in aid of Werris Creek mum-of-two Michelle Jones, 26, whose daughter Sienna has a terminal disease called canavan.
Ms Jones’s mum, Gail, said it was a disease of the brain.
“The chromosomes in Sienna’s brain are mutating and destroying the white matter in her brain. The last known case in Australia was 20 years ago,” Mrs Jones said.
“It’s a genetic thing: both parents have to be carriers.
“She’s not going to survive – there’s no cure – so we could have her for a few months or have her for a few years, but we don’t know ... we could lose her at any time.”
Ten-month-old Sienna has re- cently been fed by tube and before that she was at the hospital almost every week, Ms Jones said.
Ms Jones had noticed something wrong with Sienna when she was about three months old.
“She wasn’t feeding much from the start ... we noticed how she couldn’t roll, couldn’t look at you, couldn’t hold toys in her hand, couldn’t hold her head up,” she said.
Ms Jones, who also has another daughter called Brooke, 5, is grateful for the riders’ help.
“It’s very heartwarming knowing that there are people out there, when it comes to need, can help out,” she said.
“We’re very grateful for any help that we can get ... it’s very nice of them to do that.”
The family established a bank account for people to make donations if they wish.
The details are: New England Mutual, BSB 932000, account number 737502.
For more information call Troy Windle on 0457 895 626.
