Halls Head boy one of 18 in the world living with Vici syndrome

A HALLS Head couple is trying to raise $45,000 to buy a new seven-seater vehicle with a wheelchair lift to take their son Ziggy to school and medical appointments.

Ryan and Ruby Howell plan to buy a new Kia Carnival for five-year-old Ziggy, who is just one of 18 people in the world with Vici syndrome.

The condition is a severe progressive neurodevelopment disorder caused by a mutation in the inherited EPG5 gene.

It affects Ziggy’s motor development, vision and hearing.

His upper airway secretions need require frequent suctioning, he suffers from seizures and is dependent on a feeding tube.

There is no cure but the couple said their son’s condition is treatable.

“Ziggy can’t have anything fed to him through his mouth as the functioning of his breathing, respiratory and trachea is problematic,” Mrs Howell said.

Mr Howell said his son cannot walk or stand on his own.

“To help his bones and joints strengthen he stands once or twice a day in a standing frame with help from either me or my wife or his teacher when he’s at school,” he said.

“Sometimes he can see us and he knows our voice and he’s aware of noises and sounds.”

Mrs Howell said Ziggy’s disease was unpredictable.

“Some days Ziggy’s health is good and some days it’s bad,” she said.

“Some days I don’t send him to school because he can have problems breathing. We’ve been meeting with a surgeon to see if a procedure would help with his swallowing.”

The couple do not work as they are full-time carers to Ziggy. They said they would buy a car with wheelchair access with the money they raise on Ziggy’s GoFundMe page.

“We don’t own a car at the moment but we’ve been borrowing a family friend’s four-wheel drive with no wheelchair access at the moment,” Mrs Howell said.

The National Disability Insurance Scheme has helped Ruby and Ryan with funding to spread the word about their cause.

The family have already been offered a $20,000 donation from Apex and a $5000 donation from Murray Mandurah Mayday.

Freedom Motors will also offer to provide the vehicle they hope to buy at fleet price so the couple would save around $6000.

“The car would assist us with taking Ziggy to school and picking him up every day, doctors appointment which can occur up to three times a week and when he’s in and out of hospital,” Mrs Howell said.

The couple are close to meeting their target, with just over $10,000 left to raise.

To donate to Ziggy Howell and his family, go to https://www.gofundme.|com/ziggy-s-wheels-to-go.