A shining light in dark days

Chayse with Captain Starlight. (Supplied) 209041_01

By Laura Michell

Mernda’s Kristen O’Bree credits the Starlight Children’s Foundation with making the Royal Children’s Hospital a more welcoming place for her family, especially son Chayse.

Chayse, 7, has a rare genetic disorder called LPIN1 – the same condition which caused the death of his brother and best friend, Cruze.

LPIN1 is a metabolic disorder which can cause rhabdomyolysis – the breakdown of muscles – and ultimately cardiac arrest.

Chayse was diagnosed with the condition last May. He was tested for LPIN1 on the advice of doctors at the RCH, following the death of Cruze in September 2018.

Kristen and husband Michael did not know Cruze, 6, had LPIN1.

Last year, Chayse spent 40 nights at the RCH being treated for LPIN1. During his stay, he was put in touch with the Starlight Children’s Foundation and Captain Starlight, which helped make his time in hospital more enjoyable.

Mrs O’Bree said returning to the hospital where Cruze died had been extremely difficult for the family.

“When Cruze died, we were at The Austin and they transferred him to the Children’s and that’s where he died … I never wanted to go there again,” she said.

“When we found out about Starlight, it was a huge difference, [Chayse] was so excited.

“The captains would come up and visit him and he would just laugh – hysterically laughing – the whole time.

“I think they’re my favourite memories because they just bring so much happiness on all the days when bad things are happening.”

The Starlight Children’s Foundation recently launched a donations appeal, calling for the public to support it in its quest to take the fear and loneliness out of hospital stays for children.

The foundation is hoping to raise $355,000 by June 30 to help its volunteers run the Starlight Express Rooms in hospitals for children to play and have fun, and to assist with its wish granting program for seriously ill children and their families.

To donate, visit: starlight.org.au/donate