Maisey’s perfect day would be filled with music, motorbikes and a never-ending supply of strawberries. Stella’s would be an adventurous day of swimming and playing pranks on her big brother Bailey.
The six-year-old identical twins are the best of friends and share a love of zooming around the family property in their mini ride-on cars. They also share an identical and rare genetic condition.
The girls were born prematurely at 33 weeks and very soon they developed serious breathing and feeding issues.
Mum Reneya said those early weeks were a blur of frightening medical episodes with her tiny babies needing to be resuscitated on multiple occasions.
“The girls were in intensive care for months while doctors tried to determine what was going on,” Reneya said.
After noticing one of Maisey's eyes didn’t open the same as her other, further tests were done which showed both girls had a Chromosome Deletion.
Whilst it didn’t explain all of the medical issues, it was considered a probable cause and the family hoped that the issues might resolve with time as their babies grew.
At three months, Reneya said they were feeling optimistic as they had gone two weeks without Maisey going into respiratory arrest, which allowed for an overnight discharge.
Sadly, the following morning their worst fears were realised.
Maisey stopped breathing and Reneya started life-saving CPR on her baby girl as they were rushed back to hospital.
While waiting on the ward, Stella also went into respiratory arrest. Overcome with fear, Reneya and dad David pushed for answers.
After seven agonising months in hospital, genetic testing ultimately revealed both girls had Congenital Myasthenic Syndrome (CMS). This rare condition severely affects swallowing and breathing and requires constant medical care to prevent Maisey and Stella from respiratory failure.
Hospital admissions, ongoing treatments and rigorous medication schedules are now a part of the family’s life.
The twins have had surgery for PEG feeding tubes, hundreds of blood tests, chest x-rays, ultrasounds, treatment for aspiration pneumonia and high flow oxygen breathing masks.
“It’s a constant worry. The girls go downhill so quickly and both have been resuscitated many times - in Maisey’s case, 20 times before she’d even turned one,” her mum said.
The constant strain has taken its toll on the close-knit family of five.
“David, Bailey and I used to head off for weekends away on a whim. We went from being casual parents who said yes to last minute plans, to suddenly being isolated and anxious completely consumed by schedules, therapies, specialists and hospital,” Reneya said.
The long hospital stays were hard on Bailey too and Reneya said she can’t imagine how he’d have got through it all without the Starlight Express Room.
“As parents, we do our bit to offer distraction, but it’s better when it’s delivered by the bright, smiling faces of Captain Starlight. Bailey made the absolute most of the Starlight Express Room. He loved the arts, crafts, fun and welcoming atmosphere. It was exactly what he needed and we’ll forever be grateful.”
The hardest part has been the overwhelming fear and anxiety that Stella and Maisey deal with as they’ve got older.
“Not only have both girls been resuscitated multiple times, but they’ve also seen it happen to the other. They are terrified of all things medical. Stella in particular, becomes very scared and withdrawn,” Reneya explained.
Toward the end of 2024, Stella suffered a severe medical episode where David & Reneya performed CPR on her for 11 harrowing minutes.
Stella was placed on life support in an induced coma.
But the sedatives were impacting Stella’s muscles, and her body could not absorb her regular medication. Coming out of the coma and being awake for the continuation of her life-saving treatment was painful and traumatic.
“It’s too much for a five-year-old to cope with that much pain and fear,” Reneya said. “Six months later she was still filled with anxiety about hospital. Her hair fell out and she became a shell of who she was.”
The family do everything they can to try and reframe the experience, focusing on the positive outcomes to help Stella deal with the trauma. But Reneya says it’s an ongoing process to keep reassuring her and that even seeing an ambulance can trigger her fear and anxiety.
After years of relentless stress and worry, Starlight has helped the family create moments of much-needed joy and happiness.
“All we wanted was to make new happy memories as a family and Starlight made that possible by granting Maisey’s wish.”
For her wish, Maisey and her family went on holiday to Queensland to see the animals at Sea World, splash about at Wet & Wild and swim at the beach and pool.
“At first we were worried about being away from everything we know,” mum said. “But in no time, the girls were thriving and we relaxed and loved the freedom of no schedules. It was like they were different kids, no fear, just soaking up the fun and beauty around them.”
Reneya said Maisey’s wish helped them see what’s possible as a family.
“Maisey’s wish showed us that we can push ourselves to go on more adventures; it shifted our perspective on what life can be now. We believed in ourselves and our children, and we made the most of it. We’ve made so many good memories that we’ll have forever.”
And there are even more happy memories on the horizon now it’s Stella's turn for her Starlight Wish to come true.
Stella had so much fun on Maisey’s wish, she wants to do it all over again! She’s so excited; every morning she asks if today is the day they fly.
Her mum says the familiarity of going back to the same spot will mean the girls will feel safe, reassured and happy from the get-go.
“There have been many times when we’ve not known if our time with them would be cut short, and that’s devastating as a parent. So, to make these memories together as a family- to replace all the painful ones - that means the world to us.”
