Avi McElwee’s health battle brightened up by Starlight Foundation

A miracle clinical trial gave a Darwin youngster a fighting chance when she had just months to live. Now her family is calling for support for the charity that helped them through the worst days.

Bethan McElwee and Aviana McElwee are thankful for organisations like the Starlight Foundation for making each hospital visit a bit easier. Picture: Pema Tamang Pakhrin

It is hard to imagine being able to find a silver lining to spending almost half your life in hospital.

But for 7-year-old Darwin girl Avi McElwee, it’s easy.

The Starlight team.

Mum Bethan said her family were in and out of hospital a lot, after Avi was diagnosed with type 1 spinal muscular atrophy as a baby.

The initial prognosis was not good and baby Avi was placed into palliative care, but she soon got on to a very experimental clinical trial.

“We were hoping just to give us some more time and it just started working,” Ms McElwee

Avi McElwee is able to spend time in the Starlight room whenever she’s in hospital. Picture: Pema Tamang Pakhrin

The family relocated to Sydney for treatment and after it was discovered to have paused progression of her condition, has since returned back home to Darwin.

Ms McElwee said for the most part Avi was able to live life to the full, moving around in her wheelchair.

“She lives a really fulfilled life,” she said.

“She can swim a little bit. She does a little bit dancing and she loves school ... she’s come a very, very long way.

“We find it quite an easy way of life with everywhere being so accessible and Darwin’s quite flat.

“The weather is perfect because it’s better not to be in winter environments.”

However with a weakened immune system, Avi gets knocked around a bit by pneumonia frequently.

“We’re usually in Royal Darwin Hospital about every three months,” Ms McElwee said.

“It’s horrible that she has to go to hospitals so much.

“But the thing that makes RDH so much less stressful and a lot more pleasant for her is having the Starlight Room.

Aviana McElwee with mum Bethan and brother Hugo get to spend time together at the Starlight Express Room. Picture: Pema Tamang Pakhrin

Ms McElwee said Avi’s face lit up whenever the Starlight Captains walked in the room, and it had been that way since day one.

“When she thinks about going to hospital it’s the Stralight Captains that she always talks about,” she said.

“We go to Starlight room and then like Mom, Dad, brother, sister, like we can all be together.”

September marks the start of Tour de Kids, a fundraising effort that supports the charity that helps sick kids like Avi.

People can get involved by setting a goal, getting on a bike and raising money, which the McElwees encourage anyone who’s able.

“Whenever there’s any kind of fundraising campaign, we always want to try and get on board and try and encourage people to donate because they are such a good charity,” Ms McElwee said.

Tour de Kids challenge aims to raise $1 million to help brighten the lives of 25,000 sick kids. Register at tourdekids.org.au to join the ride that gives back this September.