Exclusive:
Five-year-old Gunner Lewis-Vale, who was born with a rare metabolic condition, had his life saved by stem cells from a baby’s umbilical cord that was frozen 16 years ago
Every step five-year-old Gunner Lewis-Vale takes and every word he says feel like miracles for his doting parents. It’s only now, with him finally being free of feeding tubes, that he can talk and has the energy to wander about.
And it’s all thanks to stem cells from a baby’s umbilical cord that was frozen 16 years ago in the US. This is the longest known time for a cord to be frozen before stem cells were taken to save a UK patient.
Following six months in isolation after the procedure, Gunner took some wavering steps a few weeks ago and is now happily up to mischief. His mum Holly, 34, a special needs teaching assistant, and husband Jamie, also 34, a bathroom and kitchen fitter, are eternally grateful to the donor family.
Holly tells the Mirror: “It’s incredible to think that a baby’s umbilical cord frozen all those years ago has saved Gunner’s life.
“That mum chose to do it after her baby was born, and we are so thankful. She will never know that her decision saved his life.”
Gunner appeared to be fine when he was born in 2019. He failed his newborn hearing tests but seemed healthy other than that. But when the lad was 18 months old, his parents noticed his head was large. He was also suffering continual respiratory infections.
Holly says: “For six months he’d been constantly poorly. The doctors thought I was just a worried mum but I knew there was something wrong.” In January 2021, the couple took Gunner to A&E after he developed a temperature and a doctor noticed that he had an irregular heartbeat.
Gunner, from Highley, Shrops, was referred for more tests at Birmingham Children’s Hospital. He was diagnosed with a rare metabolic condition called Hurler syndrome, which stops the body breaking down sugar and causes most patients to die of heart failure before they are 10.
Holly says: “It was such a shock. The doctors told us his only hope was a stem cell transplant.” After a global search, a donor was found in Germany and a transplant took place in August 2021.
But Gunner’s health soon deteriorated. Holly says: “We kept praying the decline would stop, because the donor had been the only person in the world that could have saved Gunner.”
By October 2023, the transplant had ceased to work and doctors suggested a last throw of the dice. They had found a match from a baby’s umbilical cord cells, frozen at an umbilical cord bank in the US in 2008.
Holly says: “They told us there was a risk, as umbilical cord cells are immature, which means they take months for the immune system to grow and start working. He could develop an infection at any time, which would have been life-threatening.
“But we knew it was his only chance of survival, so we said we wanted to try it.”
The transplant took place in January last year. Gunner then spent six months in isolation in hospital while his immune system developed. But the transplant has been a fantastic success.
His immune system is working at 100%, compared to 80% after the last transplant. His strength is building daily and he is making up for lost time with the family, including sister Daisy, eight.
Last month, Gunner began talking for the first time, after his feeding tubes were removed from his throat and stomach. Holly says: “They were removed in September and he started to say a few words but he started speaking properly for the first time at Christmas, which was lovely.”
The family have set up a website to educate people about the condition and hope to help find a cure. Holly says: “We also want to make people aware umbilical cords can be donated for stem cells and save lives.
“I would love to let that mother know how she has saved my child but it was an anonymous donation. It’s been an incredible gift.” The Anthony Nolan charity, which works in stem cell regeneration, said this marks the oldest frozen umbilical cord they have used, as the previous record was 13 years.
The charity added: “The blood from the umbilical cord and placenta is a rich source of stem cells, capable of replenishing bone marrow.
“Where patients don’t have a good match on the unrelated adult donor register, cord blood transplants can provide a lifesaving option.”
