Very Special Kids supports 46 families in the Hume region, 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. One of those families is the Hubbard family from Albury, parents Lillian and Terry and children Kyra (17) and Tyson (15).
Tyson, now 15, was diagnosed with Cystic Fibrosis at just six weeks old from a special heel prick test but despite the shock of the diagnosis the Hubbard’s were not surprised.
Lillian says they felt there was something just not right with their little boy.
“We knew there was something wrong. I can’t tell you how weird the feeling is, you are relieved that you know what it is but you know there’s a whole other game you’ll have to play,” Lillian says.
At the time, the family lived in Shepparton but soon moved to Melbourne due to frequent hospital admissions. This is when they first discovered the services that Very Special Kids provides to families with children life-threatening conditions.
Tyson not only battles Cystic Fibrosis, which is an incurable lung and digestive system malfunction, but also has a secondary lung disease and diabetes. Despite his obvious challenges Lillian says Tyson never lets the disease get him down.
“It has made him the kid that he is,” she says.
“He doesn’t like to upset people; he likes to make sure that everyone else around him is ok too.”
This year has been especially tough on Tyson with his lung function slipping and requiring hospitalisation, which involved a round of antibiotics and 14 days of intensive physiotherapy.
The family have been supported by Very Special Kids through a Very Special Kids trained family support volunteer, who helped out with caring for Tyson’s sister Kyra when the children were young.
Lillian says having a family support volunteer was a “life-saver”, especially when Tyson required hospitalisation.
“I don’t know how I would have got through the tough times without the help,” she says.
“The fact that they’re there for the whole family is very important – it’s a family unit and that’s why we love it.”
Now, living in Albury, the family are supported by the Hume Family Support Worker who offers emotional and practical support.
Very Special Kids operates an office in Shepparton with a Family Support Worker providing support to families in the Hume region including counselling and advocacy, and coordinating local programs and events that provide families the opportunity to meet each other and share information and experiences.
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 Tyson, and their families, by donating to the Very Special Kids Piggy Bank Appeal.