Help families like Ellie’s make precious memories – while there’s still time
Every moment with a seriously ill child is precious—and heartbreakingly short. For families like Ellie’s, your support brings more than care: it brings comfort, dignity, and time to make memories that last forever. This is Ellie’s story.
A difficult diagnosis
Ellie was born at just 38 weeks, weighing 5lbs 6oz. She was a tiny but happy baby, and we couldn’t wait to start our life as a family together.
Fluid had been picked up on her brain however, before she was born, so we knew she would need further tests to determine if anything serious was wrong, but we could never have predicted the heartache that lay ahead.
Living with Miller-Dieker syndrome
An MRI confirmed Ellie had a rare brain disorder called Miller-Dieker syndrome, a cruel, rare condition that meant she would suffer from seizures, developmental delay, weak muscle tone and even struggle to swallow or breathe. We were told her life expectancy would be between two and ten years old and that our brave wee girl would need round-the-clock care.
The devastating impact on family life
As the illness progressed, becoming Ellie’s full time carers was emotionally and physically exhausting. The seizures were the most devastating part. As a mother, I can’t describe the feeling of holding my baby girl as she’d stop breathing and her little face turned blue. They’d come in clusters, sometimes up to eight in one day, and she would need rescue medicine, oxygen and specialist care to bring her back to us.
Ellie’s condition made simple things other families do impossible. It broke my heart to think about her first trip to the swimming pool, and all the other missed milestones we’d never get to experience. It felt like all our time together was in hospitals, and all our memories were of keeping her alive.
Finding hope at Robin House
But CHAS changed all of that, with our first respite visit at Robin House.
When we arrived at Robin House the stress just melted away. We’d been worried that Robin House was a place for dying, but Robin House was about keeping the joy alive. Ellie’s illness had made it impossible for us to ever go away as a family, so we called those three days at Robin House "our wee holiday". But it was so much more than that.
Robin House allowed Chris and I to stop being Ellie’s carers and to just be her mummy and daddy again. Even the freedom to do simple things like going on a family walk in the sunshine felt incredible.
One special memory that meant everything
The highlight of our stay was getting to take Ellie swimming. I’ll never forget how peaceful she looked in the water, even falling asleep in my arms.
The family getting to see Ellie swim in the pool at Robin House was a dream come true.
Chris, Ellie’s Daddy
A peaceful goodbye, surrounded by love
Tragically, as we looked forward to our second respite visit, Ellie’s condition suddenly got worse. It was heartbreaking, but the amazing CHAS at Home nurses made it possible for Ellie to spend her last days at home, surrounded by family. On 9 November 2022, Ellie passed peacefully in my arms, with her dad by her side, aged just 20 months old.
I know we only got to visit Robin House once. But it was enough for us to make memories that we’ll treasure forever.
Thank you for helping CHAS to give us that precious gift.
Lots of love Chloe & Chris Smith Ellie’s Mummy & Daddy
I’m so grateful to CHAS for helping families like mine to make precious memories while they still have time together.
Will you help make more memories today?
It's hard for families across Scotland facing the death of their child alone.
Our TV ad depicts the heartbreak faced by families whose children die young and features CHAS Nurse, Jane Carter, who works at Robin House.
Your support provides hospice and at home care for families so that they can spend precious time together.