There are just seven people in the world with the rare bladder disease Eosinophilic cystitis.
Ten-year-old Rose is one of them.
She is about to face her 47th surgery in three years.
Up until the shock diagnosis in 2017, Rose had been a happy, healthy kid. A bubbly extrovert, her life was filled with ice skating, dancing, ballet and gymnastics.
But she suddenly lost her appetite, had recurring urinary tract infections and her weight dropped dramatically.
Tragically, an ultrasound revealed a tumour in the wall of her bladder.
Mum Janet will never forget the day their world came crashing down.
"We were told to go home from hospital and wait for the results. But by the time we got to the car, the doctor called us and Rose was rushed into emergency surgery," mum Janet said.
What followed was a harrowing time for Rose as she suffered multiple haemorrhages resulting in her needing a Stoma bag.
"The doctors told me they nearly lost her," Janet said. "From then on, it felt like the tumour took over our lives and Rose has been in hospital ever since."
Every aspect of family life was impacted. Janet had to leave her full-time job at an art gallery to care for Rose. The strain took its toll on family relationships, and financially it has been an uphill struggle.
"My life went from very comfortable to now watching every penny," Janet says. "I get part-time work when I can, but the demands of hospital make it tough to manage. I try and do all I can so Rose doesn't go without."
While dealing with so much pain and sadness, Starlight is there with vital moments of joy and happiness.
When Rose is in isolation in hospital Captain Starlight brings her fun and laughter helping her get through the long, lonely days. Knowing Rose's passion for dance, the Captain Starlights often come into her ward singing and dancing! Those visits are the highlight of every day Rose spends in hospital and help take her mind off the reality of her illness and treatment.
"The Captains get dressed up in all the protective gear and come and say hello. They'll decorate the windows of her hospital room to brighten up her mood. They keep Rose sane and happy," Janet said.
Since her diagnosis, Rose has spent more time in hospital than anywhere else and she's often not physically well enough to do all the activities she loves. Despite all she endures, her fighting spirit shines through and her family call her their 'Princess Warrior.'
"Rose has missed out on three years of her childhood, but she's determined she's not going to let this illness rule her life. She won't let it win," mum said.
Janet says her daughter has a heart of gold and always thinks of other kids on the Oncology ward. She’s even volunteered to donate her long hair to help someone else.
Sadly Rose has spent her last two birthdays in hospital, as well as her last three Christmases. Rose is very close to her three older siblings and being apart from them is especially heartbreaking.
"We've unfortunately been in hospital for all the big holidays. But the Captains always make a fuss of Rose with fun surprises, cakes and gifts. They make her feel like she's No 1," Janet said.
At Christmas time, Captain Starlight brought the festive fun to Rose with tinsel, lights, games and songs. Rose watched the Christmas pantomime on Starlight TV and joined in the fun of the Starlight Express Room from her hospital bed.
"Even though we were in hospital on Christmas day and missed being at home with family, Captain Starlight made it just as special. I can't imagine what hospital would be like without Starlight. It's the one thing Rose looks forward to."
Rose has more moments of happiness to look forward to as she has just been granted her Starlight Wish. As soon as Rose found out about her wish, she knew she wanted an animal adventure!
On her wish, Rose will get to be a VIP Zookeeper for the day at Featherdale Wildlife Park. She will hand feed wallabies, pat koalas and maybe even see some baby quokkas!
Featherdale has the biggest collection of Aussie animals in the world, so Rose is busy planning all the animals she wants to see.
"This is going to be a once in a lifetime experience Rose will never forget," Janet said.
The excitement and anticipation has brought Rose so much joy amid the toughest times. Her mum said thank you doesn't seem like enough.
"What Starlight does is so important especially for kids like Rose who are in hospital for long stretches of time. From the bottom of my heart, thank you," Janet said.
There are a few more wild surprises coming Rose's way on her Starlight Wish, so stay tuned...
