Miles’ story

Mum Georgia Williams has spoken of the “overwhelming and completely consuming” reality of having a child with complex needs – and the invaluable support she receives from East Anglia’s Children’s Hospices (EACH).

Son Miles, three, was unexpectedly diagnosed with dilated cardiomyopathy and heart failure when he was just two weeks old, in October 2019. The left side of his heart is oversized, meaning it doesn’t effectively pump blood and oxygen around his body.

Miles’ condition has led to complications throughout his short life but he remains a happy, bubbly little boy. Georgia said: “He’s a child who sees the good in everything and is rarely seen without a huge grin plastered across his face.

“Although he’s only three, he’s intrinsically positive and extremely affectionate and he adores his six-year-old brother, Blake. He’s currently going through the ‘copying everything his brother does’ phase.

“Miles enjoys creative things – magnet tiles, playdough and drawing and I’d also describe him as the world’s biggest fan of Ben and Holly’s Little Kingdom!”

Despite her son being a ray of sunshine, Georgia, 34, says nothing can prepare a parent for suddenly having a critically-ill child to look after. Herself and husband Brandon, 36, had no idea anything was wrong during the first fortnight of Miles’ life.

However, things moved quickly after a night of poor feeding and drowsiness led to them taking him to the doctors.

They then had to make an emergency dash to the A&E department at Norfolk and Norwich University Hospital, before being blue-lighted to the intensive care unit at Great Ormond Street Hospital, in London.

“We had no idea anything was wrong, so the speed at which everything happened was hard to grasp and we were minutes away from losing him,” said Georgia, who lives in Old Catton.

“When most parents find out they’re expecting, they’ll say ‘I don’t mind the gender, so long as the baby’s healthy’. When you’re suddenly facing a different reality, it’s overwhelming and completely consuming.

“You suddenly become not just a parent but a nurse, researcher and student. For a long time, we’d alternate with one parent at GOSH with Miles, and the other at home with Blake.

“We tried to create normality for Blake as best we could, but we often felt completely overwhelmed and out of our depth.”

During their time at GOSH, the family were introduced to EACH and they continue to receive support at The Nook.

“Although not much can ease the journey we’ve been on as a family, EACH has been a huge support during some of the toughest times we’ve faced,” said Georgia.

“As a family, we’ve benefited from fun-filled family events, sibling-only events for Blake to let off steam, counselling services and home volunteers who offer us various help around the house.

“The fact we have a family care coordinator who checks in regularly and offers ideas and support for us as a family is a wonderful source of stability for us. Everyone I have spoken to have been incredibly supportive and so willing to help in any way they can.”

Published in June 2023

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100).

He’s a child who sees the good in everything and is rarely seen without a huge grin plastered across his face.

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