Highton youngster Haris Iqbal loves an adventure but without a wheelchair-modified car he and mum Renee Jelowyi are “isolated” and “housebound”.
The artistic seven-year-old, born with severe skeletal muscle weakness, is backing his mum’s campaign for a wheelchair van.
“I’d be able to travel everywhere with my family,” he said.
“I’d love that.”
As Haris’s full-time carer, Renee could lift him into a regular car seat until recent surgery.
“Since that it’s just too painful (for Haris),” she said.
“He’s got rods in his spine to keep his back straight and he’s just too heavy.”
Haris’s nemaline myopathy forced him to use a powered wheelchair and BiPAP breathing machine, Renee said.
“You need to help him press Lego pieces together, that’s his level of weakness.”
His love for video games and drawing helped him develop fine motor skills and, according to teachers, the “best” handwriting in class, Renee said.
But with wheelchair taxis unavailable before 9am he was often late to school.
“He’s quite bright but 15 minutes every day is going to add up,” Renee said.
“He’s always making plans, like what we’re doing tomorrow. It’s hard when I can’t get him out and about.”
Renee said National Disability Insurance Scheme (NDIS) funded only car modifications. Her own vehicle was unsuitable.
She set up a fundraising page for Haris, which had raised $6000 of its $30,000 goal.
“He’s just the most loving and caring kid. He never gets angry and he’s always thinking of others.”
The fundraising page is at gofundme.com/wheelchair-van-for-haris.
