He has artistic talents beyond his years, but 13-year-old Joel Hart of Wentworth Falls also has muscular dystrophy, which means he needs a powered wheelchair to get around comfortably.
The National Disability Insurance Scheme has paid for his vital chair, but the family car is too old to be modified, limiting their options severely.
“We cannot afford a new car on our own as my mum has multiple sclerosis and it just isn’t in our budget,” Joel said.
“At the moment my chair is only kept at school because we can’t transport it around. This means that sometimes I miss out on basic stuff – like getting out with my friends or school events.”
In 2006 the Hart family got Joel’s diagnosis. A year later mum Belinda got hers – a double whammy.
“It was like someone hit me with a baseball bat,” dad, Steve, 50, said.
Joel’s condition has worsened in the past year, requiring the powered chair. The NDIS will pay for car modifications, if the family purchase a much newer vehicle.
“Having a car that my whole family can travel in is really important to me too … accessible taxis are expensive.”
Upper Blue Mountains Sunrise Rotary has stepped in to help with his campaign.
Spokeswoman Margie Gargan said their fundraising efforts for a customised vehicle for an electric wheelchair for Joel will include a special night at the Wentworth Falls Country Club later this year.
“This is a special family,” Ms Gargan said. “Joel has a great outgoing personality, he is a delightful young man and is also a talented pen and ink artist.”
Rotary plan to turn many of Joel’s drawings into jigsaw puzzles as part of the fundraising appeal.
Both Mum, Belinda, 47, and Joel are hopeful for a cure for their conditions with ground breaking research happening all the time.
”Mum and I can both feel powerless at times … I’d like to have an antidote,” Joel tells the Gazette, as sister Tullie, 8, pipes up “I’d like a wand to help too”.
Those interested can donate to ‘Transport for Joel’, through the Blue Mountains Rotary at www.rawcs.org.au and then click on donate and enter project 64 for 2016/17. Donations are tax deductible.
Rotary is hopeful of raising nearly $40,000 and are also seeking help from Penrith Toyota.