TWO Australian charities have formed a partnership to enable families living with a terminally ill child the opportunity to get access to respite care, no matter where they live.
Thanks to more than $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 transport for regional children with life-threatening conditions to the 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 90 children to Victoria’s only children’s hospice, where they will receive free specialised 24-hour nursing care and give their parents a much-needed break.
Alivia Bell from Geelong was born with Rett Syndrome, a severe genetic disorder of the nervous system. The 13-year-old cannot walk or talk, has frequent seizures and requires 24-hour-care for all her basic needs.
Alivia’s mother Fiona said travelling with her daughter could be difficult because of her high needs, and finding an extra person for the trip was not always easy as her partner worked full-time.
“Driving a long distance with Liv can be stressful and I avoid doing it on my own. It helps having an extra pair of hands to help monitor her seizures and behaviour, to feed her and make sure she’s entertained as she can get irritated easily.”
The Bell family first trialled the Road to Respite service in January, and Alivia was picked up by the van the same morning the family set off to Byron Bay for a break.
“Alivia went for her holiday at Very Special Kids and it allowed us to go on our holiday where we could regroup and have a breather,” Ms Bell said.
“Having Liv picked up certainly took away a lot of stress and it felt like more of a holiday because we didn’t have to worry.”
Very Special Kids chief executive officer Michael Wasley said the partnership would help overcome the barriers that restrict regional families from getting access to 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.”