Focusing on what’s really important

For most of us the holiday season is both a wonderful time to spend with our families, but also a time of stress as we frantically shop for gifts, entertain guests and attend events.

At the Winrow house, it’s a quieter time. For parents Vanessa and Scott, having their beautiful son Josh, whose serious epileptic syndrome could send him to ICU without warning, has made them prioritise what’s really important.

Christmas for the Winrow’s centres around family time, and doing things together that don’t put too much pressure on Josh.

“Christmas shopping? Who’s got time for all that hullabaloo?” We have to be mindful of Josh. If he’s having a bad day we just roll with it, and plans might change,” says Vanessa.

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

Up until Josh was two-and-a-half years old, the Winrows had no idea there was anything seriously wrong.

“The seizures came out of nowhere, and we found ourselves calling the ambulance,” says Vanessa.

“It was very frightening and we were unsure of what to do. It got quite out of control before the doctors were able to find any medication to stabilise it.”

A couple of years on at an Epilepsy Foundation of Victoria meeting, Vanessa learnt of Very Special Kids.

“I was all for finding all the support we could possibly get,” says Vanessa.

Josh’s syndrome means he requires constant care from Vanessa to meet his daily needs.

“I’m the nurse, the everything. I’ve had to learn how to medicate him in an emergency situation so that we don’t end up in hospital,” she says.

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.

“None of the family could really deal with his seizures and it’s too frightening for them.

“Whereas 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.”

Vanessa also receives emotional support from their Family Support Worker, Edwina, and attends coffee mornings where she can compare notes with other mums who have children with a life-threatening condition.

“Having someone there to talk to is definitely helpful when you can’t talk about certain things with your friends,” she says.

For Josh’s eight-year-old sister Phoebe, it can be hard having a brother with a life-threatening condition. Phoebe attends Very Special Kids 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. It helps to have something that’s entirely about her, where she is the special kid for that time,” she says.

As Josh has been getting older and more independent, Vanessa and Scott have wanted for him to have his own friends. Recently the family have been assigned a Family Services Volunteer to spend time with Josh.

“We wanted Josh to have his own special friend. Our volunteer, Nick, is very caring and wants to help others. He’s one in a million, I think,” says Vanessa.

In the future, all Vanessa hopes for, is that Josh will be happy. “I think getting a friend is the first step to that,” she says.

We currently support 926 families, like the Winrows, who receive essential family support services and access to respite and end-of-life care at Very Special Kids Hospice. This number will continue to grow, so, this Christmas we need your help more than ever.