Road to Respite – Helping families in Ararat

Last month we announced that we had formed a significant partnership which would enable regional families living with a child that has life-threatening illnesses the opportunity to access respite care.

Thanks to over $156,000 of funding from the William Buckland Foundation, Road to Respite is a joint initiative of Very Special Kids and the Royal Flying Doctor Service (RFDS) 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 benefited from the new service is the Raynor-Rogers family from Ararat.

Sixteen-year-old Emily Raynor-Rogers was born with Hydranencephaly, a rare condition in which the brain’s cerebral hemispheres are absent to varying degrees. Emily can’t walk or talk, has regular seizures and requires 24-hour-care for all her basic needs.

Parents Sandra and Graeme say the Very Special Kids Hospice is their only respite and because of where they live and the complexity of Emily’s condition, “one trip can take up to 9 hours and a whole lot of stress.”

“It’s time consuming because we have to take constant stops along the way for medical intervention, to give medication and to provide suctioning otherwise she can’t breathe” says mother and full-time carer Sandra.

“There’s been times where we would have to stop for hours on the side of the road and wait for her seizures to be under control. Another time we had to call for an ambulance because it got really bad.”

The family first trialled the Road to Respite service in November last year.

“Having Emily picked up and dropped off by the Road to Respite van was brilliant. It certainly took the pressure off and gave us an extra two days at home to relax. From the moment she was picked up we were on holiday and it was reassuring knowing she was safe and in great care.”

We are so thankful to all involved for making this service available and look forward to seeing it help more families in need.