Hugo’s Story

Hugo Bayliss has DiGeorge Syndrome – a condition present from birth that causes a range of lifelong problems. The seven-year-old lives with various associated issues, including chronic heart and lung disease, scoliosis and complex urological anatomy. He only has the use of one kidney and needs a feeding tube and pacemaker.

Hugo struggles to communicate as he has palate complications. He uses a wheelchair as he gets tired quickly and has had numerous operations in his short life. In fact, he has spent a good portion of his first few years in hospital – often not local – and, most months, he and his family have medical appointments to attend.

Mum Sarah says that despite her early reluctance, Milton has become a key part of her family’s lives and she is hugely grateful for the support of East Anglia’s Children’s Hospices (EACH.

“Very early on we were offered support from the hospice,” she said. “We were reluctant at first – being told your child has a life-limiting condition and would benefit from hospice care is hard to take in. However, once we started using the service, we understood how much we needed help and support from EACH.

“Hugo has been using the services since he was a baby, so many of the staff have watched him grow up and overcome so many obstacles.

“As a family, that support is invaluable. Even if it’s for one night, it gives us, as parents, time to spend with our other son, George, without having to worry about what we need to be doing next for Hugo.

“We’ve also had the opportunity to do many amazing things that wouldn’t have been possible without the hospice.”

The Bayliss family use many of the services available at Milton.

Hugo has respite care, George uses the sibling service and the family have gratefully accepted support from EACH’s Help at Home service. Sarah and husband Paul have also received counselling support.

“As we go into a new period, with George recently given a diagnosis of autism Tourette’s, sensory processing disorder and a sleep disorder, we know the hospice will be there to support us,” added Sarah.

“The service the hospice has provided to us as a family is invaluable and I don’t have enough words to say how amazing and precious it is to us. The staff that look after us are not just Hugo’s nurses. They’re our friends and part of our family. They always know if there’s something wrong or if we just need to talk and there’s never judgement or expectation.

“We can truly relax when Hugo’s there, as we trust the staff and know they know him as well as us. He has a special bond with many of them and to see that as parents is truly precious. We cannot thank them enough for everything they’ve done and continue to do for us as a family.”

The Bayliss family recently met The Duke and Duchess of Cambridge during the Royal couple’s visit to Milton.

Published in July 2022

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). 

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