Nothing brings a smile to 5-year-old Riley’s face like riding her scooter. For most kids, learning to ride is a big achievement; for Riley this is an incredible milestone she’s achieved not once, but twice.
Riley was born a healthy baby. At her six-week check-up, the doctor was concerned by a heart murmur and referred her to a Cardiologist.
Just three weeks later, baby Riley had open heart surgery.
“We were in utter shock,” mum Steph said. “Suddenly our little 9-week-old baby is having life-saving surgery.”
While the surgery was a success, doctors then noticed Riley's pupils were unresponsive.
This symptom, combined with Riley’s heart condition and the structure of blood vessels in her brain, led the team at the hospital to run further tests.
They suspected Riley had MSMDS – an extremely rare genetic condition thateffects all smooth muscles in the body including the heart, lungs, blood vessels and digestive track.
Genetic testing confirmed the diagnosis. While the outlook weighed heavily on Steph and dad Henry, they said they felt grateful to have got the diagnosis early helping them learn as much as they could about the disorder and the likely complications Riley will face.
“MSMDS is a life-long, non-improving condition with no cure. It puts Riley at risk of stroke which unfortunately, can be fatal. We’re extremely lucky that so far Riley’s have not been.”
After her heart surgery, Riley was started on a range of therapies and had regular hospital visits. At the time, the family including older brother Kane, lived in regional Victoria and the stress and uncertainty of Riley’s condition took its toll.
“We didn't know how long we would have with our baby girl, so we made the decision to move back to WA to be closer to our immediate family,” Steph said.
Riley also had a secondary diagnosis of Cerebral Palsy, and her ongoing therapy schedule increased over time to include Physiotherapy, Occupational Therapy, Speech Pathology and Dietetics. Steph was only able to work part-time to manage all the appointments while also pregnant with their third child.
2024 began with the happy arrival of baby brother Parker. But just months later, everything changed.
Riley started experiencing strokes known as TIA's which block blood flow to the brain. She was admitted to hospital where she stayed for months.
The fear and emotional strain was overwhelming for the family.
“We had to 'divide and conquer',” Steph explains. “Henry went home with Kane for work and school, and I stayed in the hospital with Riley and baby Parker, and they would visit us on the weekends.”
During this traumatic time, the family discovered the Starlight Express Room which helped bring back vital moments of happiness.
“The Starlight Express Room is one of Riley's favourite places. It gives our children a place they feel safe, can relax in and can connect and create in, even on the difficult days. It’s a space where we can have fun and forget about the chaos for a moment.”
As Riley has got older, she’s become more aware of how her body moves differently to other children her age, leaving her feeling frustrated and upset when she tries to keep up or sees her younger brother doing things she can’t.
In 2025, just after hours after her brain surgery, Riley suffered a large stroke, which resulted in permanent damage to her left arm and hand making it difficult for her to hold things.
“She still remembers when her hand and arm worked at full function, so it’s difficult for her to come to terms with. She used to love swinging on a trapeze swing which she’s no longer able to do,” Steph said.
Amid so much pain and sadness, Captain Starlight has helped Riley feel like a kid again.
“We love seeing the Captains around the hospital helping all the children feel welcome and creating joy. They help Riley play games, create art or just have a chat. We have shared so many happy moments with the Captains Starlights.”
To manage her condition, Riley has countless scans and tests including MRI, CT, X-ray, ultrasounds, videofluroscopy and angiograms, many of which are performed under general anaesthetic. She was also in a wheelchair for months following brain surgery.
When her treatment leaves her too unwell to visit the Starlight Express Room, she can still join in the fun including her favourite Friday Bingo.
“When Riley can’t leave her hospital room, Starlight TV means she doesn't miss out - she’s able to connect with the Captains and she loves it when they visit her on the wards too.”
While Riley is currently preparing for further major brain surgery, she was excited to start Pre-Primary and attended five days in a row for the very first time. She’s loving doing arts and crafts and is proud to have re- learnt to ride her scooter again.
Steph explains that Riley is under the care of more than six medical teams at the children’s hospital and has regular check-ups. Knowing that Starlight will be there helps ease the stress and worry of every visit.
“Without Starlight, hospital would be much less enjoyable. Being able to find joy each day whilst in hospital is so important and Starlight helps you to do that. Starlight gives our kids a slice of a normal day and has been invaluable to our experience.”
