Road to Respite

Today Very Special Kids launched a significant partnership with the Royal Flying Doctor Service which will enable families living with a terminally ill child the opportunity to access respite care, no matter where they live.

Thanks to over $156,000 of funding from the William Buckland Foundation, Road to Respite is a joint initiative of the two charities, providing free-of-charge transport for regional children with life-threatening conditions to Very Special Kids Hospice in Malvern.

Over a two year pilot program, the Road to Respite van donated by Ambulance Victoria, will transport an estimated up to 90 children to Victoria’s only children’s hospice where they will receive specialised 24-hour nursing care free-of-charge giving their parents a much needed break.

One of the families that have benefited from the new service is the Chignell family from Bendigo, trialling it for the first time in October last year.

Ten-year-old Eadweard Chignell was born with early infantile SCN1A encephalopathy, an extremely rare genetic disorder, so rare he’s one of nine in the world with the condition. Eadweard can’t walk or talk, has regular seizures and requires 24-hour-care for all his basic needs.

Parents of five Sarah and Stuart say the Very Special Kids Hospice is their only respite and because of where they live and the complexity of Eadweard’s condition, they can stop up to five times in one trip, adding a great amount of time and stress.

Michael Wasley, CEO of Very Special Kids says “this unique partnership will help overcome the barriers that restrict regional families from accessing much-needed support services. Using RFDS expertise in healthcare and transportation, we are delighted to be providing safe transport at no cost, reducing fatigue in carers and increasing the health and well-being for children and their families.”