How the Starlight Express Room gave the whole family an escape.
There are lots of things that make three-year-old Maddie smile. Listening to stories, painting, playing hide and seek and cuddling her dolls and teddies.
Maddie's mum Monique said those smiles are incredibly precious, as so much of her daughter's world is consumed by hospitals, medicine and treatment. A world away from her carefree life of dress ups and playing with her big brother Levi.
Maddie was just two years old when tragically, tests revealed that she had Stage IV Neuroblastoma. Every aspect of family life changed in an instant.
Monique said the diagnosis was utterly devastating. "In that moment our world shattered, it felt like we'd been stabbed," she said.
Maddie was admitted to hospital and started treatment straight away. Both Monique and dad Simon had to leave their jobs to care for Maddie. It was hard for Levi - who's only eight - to see his little sister so sick and to suddenly have the family split in two.
Maddie and I have spent a lot of nights away from home. Over the past 330 days we've been in hospital for approximately 270 days with the longest stay being 60 days.Monique, Maddie's mum
Maddie endures gruelling rounds of treatment and requires round-the-clock care. The family's routines are based around hospital appointments, managing Maddie's medication and treatment whilst also trying to be there for Levi when he's not at school.
"It's a 24-hour routine making sure Maddie has her medication every six and eight hours, changing feed bags on pumps through the night, changing sheets when she's been sick, then being ready to do it all again," Monique said.
Maddie misses being at home with her brother and Monique, said they rarely see friends or family as they can't risk Maddie being exposed to even a simple cold or flu.
Thankfully amid all the pain and sadness, when she's in hospital Maddie has Captain Starlight to help her laugh, play and be a little girl again. Captain Starlight is the one bright light that she looks forward to during her long hospital stays.
Even when Maddie's at her lowest and can hardly hold herself up, she'll be able to find a smile for the Captain Starlights. They help her and us make the most of an otherwise suffocating experience.Monique, Maddie's mum
Captain Starlight and the Starlight Express Room have provided a fun escape for Levi too; a welcome distraction from a world that can feel like it's falling apart. Monique said the Starlight Express Room has given Levi the chance to play, use his imagination, make friends and creates a more positive experience when he comes to hospital to see Maddie. And that's helped the whole family cope.
"As parents, seeing our children happy is priceless and gives us a rare chance to switch off too," she said.
Given how much of Maddie's life is spent in hospital, Starlight is a big part of her world and as far as she's concerned, the best thing about hospital is Captain Starlight!
When Maddie was in intensive care feeling scared and upset, Captain Starlight appeared and immediately took her mind off everything she was going through. Her mum said it was like magic to see the difference as Maddie's tears were replaced with smiles and laughter.
Monique said she and Simon are so thankful to Starlight supporters for helping them find joy and happiness during the most difficult times.
Your generosity goes a long way. The Captains are amazing, hilarious and talented. They occupy and stimulate Maddie's mind, they help her pass the time and mask all the pain with fun and laughter. From the bottom of our hearts, thank you.Monique, Maddie's mum
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