Josh’s story – riding the extra mile

13-year-old Josh Winrow has a rare epileptic syndrome named Lennox-Gastaut that causes potentially fatal seizures. He also has an intellectual disability and is non-verbal.

As well as providing expert medical care for Josh at Victoria’s only children’s hospice, Very Special Kids also support all members of the Winrow family, which includes his mother Vanessa, father Scott and 10-year-old sister Phoebe.

Very Special Kids Hospice, with its 24-hour nursing care, is the only place Vanessa can access when she needs to have longer stays away from Josh.

“When Josh goes to the hospice I can walk out the door and I know he’s going to be fine. There’s a real sense of security that he’s in good hands.”

“Josh loves going to the hospice. He’s got lots of doting carers that know him well. Earlier this year, I was able to take a weekend away to Sydney to visit family. The hospice allowed me to take the time out I needed,” Vanessa says.

Vanessa also receives emotional support from their Family Support Worker and attends coffee mornings where she can compare notes with other mums.

“Having someone there to talk to is definitely helpful when you can’t talk about certain things with your friends, and you don’t want to feel like you’re burdening them with stuff.”

Having a brother with a life-threatening condition can also be hard for Phoebe. Very Special Kids supports Phoebe through our Sibling Program. Phoebe attends the Sibling Days every school holidays where she has fun and explores her emotions in a safe space with peers she can relate to.

“It’s essential for Phoebe,” says Vanessa. “It helps to have something that’s entirely about her, where she is the special kid for that time. And it gives her the opportunity to think and talk about what’s on her mind.”

Ride the extra mile to support sick children like Josh

On the 11-17 March the Chain Reaction Ultimate Corporate Bike Challenge is taking place to raise funds for sick children like Josh.

The funds raised from the challenge are the catalyst for a large and important upgrade to the Hospice to ensure Very Special Kids can continue to provide benchmark standards of 24-hour nursing care for children with life-threatening conditions.

To sponsor a rider or to make a donation please click here.