For one local family, the Starlight Foundation has not only provided joy for their son, it has also allowed them some precious time to spend on themselves.
Naomi Taylor and Ben McLennan’s journey started in 2016 when their son William, who has just turned five, was diagnosed with spinal muscular atrophy type 2 – a genetic disorder that affects parts of the nervous system.
Since then, it has been whirlwind of hospital appointments, therapy appointments, treatment, and dealing with things like the National Disability Insurance Scheme (NDIS). The couple say William has just come out of a seven-week stint in hospital, after a fall from his wheelchair caused him to break his femur.
“It’s never ending and it’s our normal, but when you look at it from the outside world, there are people that say ‘how do you do this?’ Naomi says.
Ben says a visit from the Starlight Captains is the highlight of William’s days in hospital, putting a “big smile” on his face.
“They’re always energetic and upbeat and make him feel happy,” he says.
“With William’s journey, it’s not just a short-term for him, it’s lifelong. I think knowing that there’s Starlight at the hospital and there’s programs set up … It puts our minds at ease, knowing that it’s not a scary place for William.”
“He [is] entertained and it gives us five minutes to have a bit of a break,” adds Naomi.
While these programs are a lifeline for many families in hospital, Starlight needs funding to continue its work around the country. Starlight Day, on Friday 1 May, is the organisation’s biggest fundraising event of the year.
Starlight CEO Louise Baxter said the organisation is hoping to raise $250,000 to support its Starlight Express Room and Captain Starlight hospital programs.
“As little as $50 will give one child a fun Starlight Surprise pack filled with activities and games, and $80 will provide access to 48 hours of Starlight TV hosted by Captain Starlight,” she said.
“Life as we know it has been turned upside down. Now more than ever, kids in hospital need fun and joy to help them cope with the loneliness, isolation and fear they are facing.
“In these uncertain times, we need your support to continue keeping our Starlight programs and Captain Starlight services running daily.”
For more information or to make a donation, visit starlightday.org.au