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George’s story: “It felt like nobody was listening to me”

young George lying down

“George was born six weeks early on 27 December. We knew from the moment he was born that something wasn’t right. He wasn’t my first baby, but he was the first to be rushed to another hospital within hours of his birth.”

Mum Carrie didn’t have to wait long for the diagnosis and, in less than 24 hours after his birth, the doctors delivered the devastating news that George had Cerebral Palsy and severe bleeding on the brain. George spent the first five months of his life in hospital, with Carrie constantly travelling between the hospital and home.

“George was baby number eight out of what would soon be nine children, and the hospital wasn’t local to our home. I had other children to look after who needed me too. There was so much travelling, I was always back and forth between the hospital and home.”

Carrie describes George as the happiest boy, who loved to just be with his family. “George was disabled but he wasn’t ill. He never hit milestones, but he was happy. He’d babble all day long to you – rolling around and babbling.”

As George grew, his health stabilised. He was finally able to start school and the family settled into a new routine. But the routine was short-lived: George suffered two seizures at school, with a third leading him into a coma. Life was about to get extremely difficult.

Fighting for care

Over the next fifteen months, Carrie fought constantly to get the care and support George needed.

“I could see George’s seizures were getting worse and he wasn’t being given the medical attention he so needed. One seizure even lasted three days. It felt like nobody was listening to me. It wasn’t until the doctors finally did a brain scan that they realised something was very wrong.”

George was transferred to six different hospitals whilst the care teams worked to find the best support for George. The hospitals were all far away from the family’s home and Carrie found herself travelling backwards and forwards again so that she could be by George’s side.

“You couldn’t touch George without him being in pain. It hurt me to see him in that much pain.”

After weeks of fighting to be heard, Carrie finally received the news that George’s care was being escalated and he was scheduled to have another brain scan. The scan revealed fluid in George’s brain. Tragically, George was not strong enough to undergo the surgery needed to remove the fluid. There was nothing more that could be done to keep George alive.

A lifeline

Facing the unbearable conversation of where they wanted George to die, George’s family were introduced to their local children’s hospice. “They told us we likely had 48 hours left with him. We were given twelve precious days. George was a fighter.”

George was eight years old when he died.

“George was Peppa Pig mad, so that is how we celebrated his life at his funeral. Everything was Peppa Pig themed, from his coffin and the service cards to the Peppa Pig pyjamas he wore. We even played the Peppa Pig theme tune.”

George’s family were referred to receive a Butterfly Fund grant from Together for Short Lives.

When your child is dying, you want them to have everything that they could want. But you still have to keep a roof over your head and look after your other children. Life has to carry on.

Carrie, George's mum

With so much to organise and unexpected costs in the first few days after George’s death, the family spent the money on a food shop. “Without the Butterfly Fund, we wouldn’t have eaten that week. The grant didn’t just help me, it helped eight other children. It helped a whole family when it mattered most.”

Donate to the Butterfly Fund today. Your gift will give a family like George’s a helping hand when they need it most.

Family stories