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

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

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

Parents of Ziggy, Ryan and Ruby Howell plan to purchase a new Kia Carnival with the funds raised.

According to the parents of two, their five-year-old son is one in 18 people around the world living with Vici syndrome – a severe, neurodevelopment, progressive disorder caused by a mutation in the inherited EPG5 gene.

The disorder would affect Ziggy’s motor development, vision and hearing.

His upper airway secretions would require frequent suctioning, he would suffer from seizures and be dependant on a feeding tube.

There is no cure but the couple said their son’s condition would be 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 would be unpredictable.

“Some days Ziggy’s health is good and some days its bad – some days I don’t send him to school because he can have problems breathing,” she said.

“We’ve been meeting up with a surgeon to see if a procedure would help with his swallowing.”

The couple, who are both not working as they are full time carers to Ziggy, said they would buy a wheelchair access car 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 everyday, 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.

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