Finding fun and happiness in hospital.
Ned's mum Emily said their baby boy came bounding into the world with an amazing zest for life. He has a wonderful imagination and his 'happy place' is the outdoors.
But sadly, for so much of his life, five-year-old Ned has had to be a world away from the people and places that he loves.
At just two, Ned became unwell with a cough and was struggling to walk. With no improvement, Ned underwent bone scan and blood tests. The results came back and the family's lives changed forever.
Ned was diagnosed with Acute Lymphoblastic Leukaemia. Emily said the news shattered them.
My first thought was, no, this can't be, this is what happens to other people. We were in disbelief that our little, giggling, rosy-cheeked munchkin was so very sick.Emily, Ned's Mum
Ned was admitted to hospital to begin treatment straight away. Their old life became unrecognisable - their world consumed by hospital, blood tests and never-ending rounds of treatment.
Emily said the 24-hour endless cycle of caring for a sick child on chemotherapy is emotionally draining, relentless and exhausting.
The bone-aching sorrow for your child's possible future, the impact on their happiness, development and worse, the gnawing anxiety within that they may not even have a future.Emily, Ned's Mum
Ned endured years of painful treatment filled with fear, dread and uncertainty. During these times the arrival of Captain Starlight at the hospital helped bring some much-needed happiness and relief when it felt like their world was crumbling.
Sadly, last year the family’s worst fears were realised. Ned's leukaemia returned and he needed a bone marrow transplant. The perfect donor match was his younger sister Eleanor - their two-year-old little "poppet." Emily said this bittersweet news just about broke them.
It was heartbreaking for the family to now watch two of their children endure painful surgery and to face yet more months of isolation and intensive chemotherapy.
"I can't begin to describe how sad it was having to walk down that agonising road again and involving another one of our precious children to battle this enormous monster," she said.
The family was forced to relocate to Melbourne from Hobart for the surgery. A heavily pregnant Emily making the trip with Ned, ahead of the rest of the family. The sudden upheaval unbearable and scary for Ned, as he desperately missed his dad and sisters.
With the safe arrival of baby Gilbert, Emily and Seth found themselves juggling the care for all four children including helping big sister Lucy settle into her new primary school. Ned needed round the clock care, suffering unbearable pain, fatigue and nausea.
Thankfully Starlight came into their lives again, providing "a haven, a little place to retreat to, and find fun and creativity."
Captain Starlight provided a welcome distraction for the whole family during the long and painful months in hospital after Ned and Eleanor's surgeries.
The Starlight Express Room is where not only our kids are welcomed, entertained, and inspired but where we as parents can find rest, smile and even join in the fun.Emily, Ned's Mum
The Starlight Express Room is where Ned's imagination can run wild - doing arts and crafts, play with his sisters and create his favourite Lego masterpieces! It's where he can be a kid again.
Sadly, hospital remains a big part of Ned's life. "Every stage has been and is still a rocky, contentious, grueling phase filled with uncertainties and no guarantees. We are sad for all of our children, particularly Ned, and it's taken its toll on our family's morale and emotional wellbeing," says Emily.
The family is so thankful for the support they've received. To supporters, she has a special message:
You help bring joy and playful distraction for kids doing it tough. I've seen first-hand the powerful difference Starlight makes to families like ours. We can't thank you enough for your generosity.Emily, Ned's Mum
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