“We live in Co Armagh with our daughter Ellie – a Leap Year baby with the brightest smile.

“When we were first told about Ellie’s condition during pregnancy, we were scared – but hopeful. We were told she had Spina Bifida and hydrocephalus, but no one could predict how severe it would be until she was born. We clung to stories of children who beat the odds. Unfortunately, that just wasn’t the case for Ellie – her diagnosis was more complex than we ever imagined.

“When she was born, her brain hadn’t developed properly. She had urgent surgery to close her spine and a shunt inserted to drain fluid from her brain. Doctors described it as a 'thin ribbon of brain,' and told us she might not survive a week.

“That was nine years ago. She wasn’t supposed to live. But nine years later, here she is – smiling every day.

“Ellie has Spina Bifida myelomeningocele – the most severe type. She has epilepsy, is visually impaired, and registered as blind. Her brain injuries affect her breathing and hearing. She’s non-verbal and needs 24/7 high-dependency care. Her bedroom at home is like a hospital room. Most of her life has been spent either in intensive care or fighting to stay out of it. That she’s still here now is a miracle for Ellie. She’s just fought through these past nine years.

“Despite everything – despite what she goes through every day – Ellie smiles. Even when she’s sick, even when she’s exhausted. She’s just a really happy child. She is joy.

“Hospice changed everything. It’s a lifeline for us, as a family.”

“We do near-hospital level care at home. We’re on high alert at all times. We’ve learned to manage seizures, respiratory crises, and complex feeding and medical equipment. Ellie sleeps with a ventilator to keep her lungs open at night. Every illness is a high-stakes risk.

“There have been times when we were told to prepare for goodbye. And then – somehow – she pulls through. She is so strong.

“But the emotional toll of this rollercoaster is enormous. The Hospice knows that. They’ve supported us through tears, through burnout, through mental exhaustion.

“Bethany from the Hospice became a lifeline during COVID, checking in regularly, helping us navigate moments of crisis, reminding us that we’re not alone.

“Our youngest, Hannah, was born during COVID, and no one could help us – except the Hospice. A Hospice nurse sat with Ellie in the hospital, so Joe could be there for Hannah’s birth. Without them, he’d have missed that moment. How do you even thank someone for that?

“The Hospice gives us more than respite – it gives us life.”

“Because of the Hospice, we’ve had the space to make joyful memories. Like the Hospice Christmas parties, or days out at the zoo. Dream Nights, where it’s just Hospice families, so you don’t have to feel out of place. Or Ellie’s First Holy Communion – a moment we weren’t sure we’d ever see.

“Even the small things – a beach day in Ballycastle, a bike ride at Center Parcs, listening to the radio – become extraordinary with Ellie. These are moments we don’t take for granted. We make memories of every precious moment.

“The Hospice helps us hold on to those moments. It helps us be parents – not just carers.

“We don’t know what tomorrow brings. But we know we’re not alone.”

“Every birthday is a miracle. Every Christmas, we start early – because we live in the now. We just take it one day at a time and try to enjoy every day. And every day, we know we have the Hospice behind us.

“The Hospice isn’t just a building. It’s a family. A lifeline. A safe place when the world feels overwhelming. It’s invaluable. And the truth is – we couldn’t do this without them.

“Please help our Children’s Hospice Little Stars by giving what you can this Christmas. Your donation gives families like ours the strength to keep going, the space to make memories, and the comfort of knowing that no matter how difficult things get, we are never alone.

"Thank you.”