Tamworth family launches 'Wheels For Alfie' fundraiser as three-year-old fights rare muscular dystrophy disease

The three-year-old suffers from LAMA2 related Muscular Dystrophy, also known as Merosin Deficient, which causes weakness and wasting of his muscles used for movement.

Alfie's mum Prudence Jones said the disease means he's not able to walk, crawl, roll or eat independently.

"It's quite rare, from my own research only about 30 people have it," Mrs Jones said.

Alfie also suffers from scoliosis and tightness in his joints, which requires him to wear braces to release the pressure.

READ ALSO:

Between physio, occupational therapy, speech therapy, dietician appointments and trips to John Hunter Hospital, Mrs Jones said Alfie was in some sort of appointment almost everyday.

"It's kind of our social life going to appointments," she said.

"It's hard when you talk to other families and they tell you they've been to the park or a birthday party."

Mrs Jones and her husband said they had "no idea" they were both carriers of the gene when they decided to have kids.

"That was all a bit of a shock," she said.

Since Alfie was born, Mrs Jones has been unable to return to full time work due to care requirements and her husband Rylan is often forced to take time off to care for their one-year-old daughter Emelia.

But there's no way she'd change her "cute", "funny" and "cheeky" boy.

"He's changed our lives for the better in lots of ways," she said.

"We were closed minded and we had no idea about a lot of things before having Alfie.

"I wouldn't change Alfie, but I would change the challenges."

With Alfie's treatment expected to become more intensive, the family is calling out for help to tackle life's obstacles and completely change how Alfie accesses the world.

In a fundraising event dubbed 'Wheels for Alfie', the Jones' are hoping to raise money to go towards purchasing a new car which will be modified to fit Alfie's wheelchair as he grows.

Mrs Jones said trying to fit everything into their current car was like a "jigsaw puzzle".

"Trying to fit a wheelchair in and then bags is pretty much impossible," she said.

The National Disability Insurance Scheme will help fund the modifications, but the family will be need to cover the cost of the vehicle.

Without the energy to push himself around, it is likely Alfie will require a powered wheelchair once he starts school, which will require a car with enough space.

The fundraiser will be held at the South Tamworth Bowling Club on October 7, at 6pm.

Barefoot bowls, live music, food, raffles and auctions will be held to help raise money for Alfie.

Our journalists work hard to provide local, up-to-date news to the community. This is how you can continue to access our trusted content: