15-year-old Alexander Macfarlaine from Mt Eliza loves the sunshine, walks around the peninsula and school. He also loves his family, parents Helen and Kevin and sister Evalouise (8).
Alexander was diagnosed with cerebral palsy, epilepsy and an intellectual disability before his first birthday.
“There is no cure for his condition so it’s a life-long responsibility to care for his every need,” says Helen.
Helen and Kevin approach caring for his complex needs as a team effort, but know it’s important for them to take a break and do some of the things other families would take for granted.
“Going to work, the gym, on holiday or socialising with friends and family, helps us engage with the normal world and have a break from caring,” says Helen.
Alexander’s visits to Very Special Kids Hospice have enabled his family to take much needed holidays.
“Having holidays away from Alexander allows us to have a good rest, confident he is well looked after,” says Helen.
“We have come back from holidays rested, refreshed and re-energised, helping us to continue to look after him.”
Helen and Kevin are grateful for the invaluable support Very Special Kids provides not only to their family, but to other families caring for children with needs like Alexander’s.
“We hope Very Special Kids is always able to provide its services to families caring for children with high needs,” says Helen.
Very Special Kids supports 223 families in the Southern region of Melbourne, and 900 across Victoria, that are caring for children with life-threatening conditions, by providing 24-hour nursing care at Very Special Kids Hospice and family support services.
A Family Support Worker in Hastings provides emotional and practical support and organises group therapy programs for families in Mornington and Southern parts of Melbourne.
It costs $7 million per year to operate Very Special Kids, with all services free-of-charge to families. Please help us continue to support children like Alexander, and their families, by donating to the Very Special Kids Piggy Bank Appeal.