A NORTHERN suburbs family that needs $8000 to send an angelic two-year-old to Sydney for therapy will hold a skateathon fundraiser these school holidays.
Clarkson grandmother Connie Slee is organising the July 1 ‘Therapy for Faith fundraiser’ for her granddaughter Faith, who has Angelman syndrome.
Susan Slee said her daughter had all the symptoms of the rare genetic condition, including not talking or walking and having seizures.
Get in front of tomorrow's news for FREE
Journalism for the curious Australian across politics, business, culture and opinion.
READ NOW“She is developmentally delayed (and) she is overly happy,” the Sorrento resident said.
Mrs Slee said they wanted to take Faith to the NAPA Centre in Sydney later this year for therapy that costs $8000.
“It’s a lifelong condition – at this stage there is no cure,” she said.
“I hope with this particular therapy that she would have more stability and perhaps take a step or two.
“If they did communication therapy, my goal would be to try and get her to nod her head ‘yes’ or shake her head for ‘no’.
“With more therapy, we can implement other ways that she can learn to communicate with us.”
Faith’s maternal grandmother, AnnMarie McGinn, said the family felt lucky to have the “beautiful little girl” who gave them plenty of smiles.
Mrs Slee said the fundraiser would be an afternoon of fun as well as raising awareness of the condition, named after a British paediatrician who first described it in 1965, Harry Angelman.
Morley Rollerdrome owner Ozzy Kilgallon said the 38-year-old facility ran a 50-50 program for community groups and individuals to hold fundraisers, splitting the entry proceeds.
Donations can also be made at https://www.mycause.com.au/page/178832/help-faith-walk-and-communicate or cureangelman.org.au.
THE ESSENTIALS
What: Therapy for Faith fundraiser
Where: Morley Rollerdrome, 95 Catherine Street
When: from 1pm to 4pm on Sunday, July 1
Cost: $12 entry, $3 skate/blade hire
More: call 9276 9870