Road to Respite

Date published

02 Jun 2018

Thanks to funding from the William Buckland Foundation, Road to Respite is a joint initiative of the Royal Flying Doctor Service (RFDS) in Victoria, and Very Special Kids, providing free-of-charge transport for regional children with life-threatening conditions to Very Special Kids Hospice in Malvern.

One of the families that have already benefited from the new service is the Chignell family from Bendigo. 

Eadweard Chignell is one of only nine people in the world to suffer a type of debilitating genetic disorder — early infantile SCN1A encephalopathy — leaving him in need of around-the-clock care.

Once a year his parents Stuart and Sarah Chignell drive the 10-year-old to the Very Special Kids respite centre in Melbourne's inner-east for some much-needed support.

But what would normally be a two-hour drive is often long, complicated and potentially dangerous.

"When you've only got one person in the car driving him, it is a risk," his father Stuart Chignell said.

"You cannot notice something in time that can be life-threatening.

"I've had to call an ambulance from the side of the road because stuff happened."

Eadweard cannot speak or control his movements, needs to be fed via a tube and regularly suffers potentially life-threatening seizures.

"He takes a lot of monitoring, on good day," Mr Chignell said.

"On a bad day, he requires 24-hour care."

The Flying Doctor looks forward to working with Very Special Kids to assist regional families like the Chignell’s to have access to respite and care in Melbourne.