Harry with Captain StarlightSticklers Syndrome is a rare genetic condition that causes hearing loss, joint and dental issues, chronic pain and fatigue.

It requires teams of specialists, daily management and ongoing cycles of tests, treatment, surgeries and therapies.

10-year-old Harry has the condition as does his dad, Michael and older sister, Sammi.

Mum Elissa says medical issues have sadly been part of Harry's life since he was born. As well as Sticklers Syndrome, Harry has many other chronic health issues to contend with every day.

"It was very scary having a baby who was very ill, and our life has been a roller coaster ever since. Harry's been through so much with 10 surgeries,  40 emergency hospital admissions, not to mention countless appointments with specialists."

Despite all he has had to endure in his short life, Harry's a loving, cheeky kid who never gives up.

"He'll out argue anyone!" Elissa laughs.

He's also keen to try out basketball and is an avid Melbourne Storm fan.

Harry with Melbourne Storm

Managing Harry's condition impacts every aspect of every day family life.

Harry wears hearing aids and has a sensory processing disorder which impacts his ability to enjoy everyday life. He also has Post Traumatic Stress Disorder (PTSD) from medical procedures which leads to severe anxiety in medical situations. Harry's eyes are cleaned and have multiple drops applied daily to help manage lesions that cause severe pain in bright light. He misses a lot of school and suffers constant pain and exhaustion.

"Our life is all about pacing," Elissa says. "We try and plan ahead, prioritise activities and schedule in downtime. But Harry can wake up and be having a great day or a horrible day either physically or mentally and plans need to change. We are always aiming at a moving target - life is never boring!"

Harry has regular appointments at Monash Children's Hospital and Royal Children's Hospital in Melbourne and Elissa cannot imagine how they would cope without Starlight's services at both hospitals.

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When Harry was younger, he would scream all the way to the hospital. Now, because of Starlight, he goes without a fuss. It has completely flipped the focus of our hospital trips.
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Harry's mum, Elissa

Harry loves visiting the Starlight Express Room to play his favourite computer games, and having fun with Captain Starlight is the best distraction possible. Elissa says Harry's PTSD can be debilitating, but in the Starlight Express Room he feels like he belongs, and the Captains always make him feel welcome.

Harry with Captain Starlight in the Starlight Express Room

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It's a place where he can just be himself and forget about everything that's going on outside the Starlight Express Room doors.
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Harry's mum, Elissa

When Harry's older sister Sammi is in hospital too, both kids are kept entertained which gives their parents much-needed downtime.

Harry and sister Sammi in the Starlight Express Room

"Knowing the kids are happy in the Starlight Express Room gives us the chance to talk as parents and digest any news from the doctors," she said.

The Starlight Express Room is all about fun for sick kids and has helped turn the family's hospital experience around.

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Thank you for bringing a smile to Harry's face, so many times when I didn't think it possible. Please keep giving, because Starlight is so important. The difference is huge, the focus of a hospital trip is now the Starlight Express Room, not the appointment, which is a huge psychological shift.
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Harry's mum, Elissa
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