Stem cells donated in 2008 change life of five-year-old boy with rare condition

A five-year-old boy has been able to leave his home for the first time in six months following a successful stem cell transplant made from a baby’s umbilical cord blood which was donated 15 years ago.

Gunner Lewis-Vale, from Shropshire, was diagnosed with a rare genetic disorder in March 2021, when he was about 17 months old.

At the time, his parents Holly and Jamie Lewis-Vale, both 34, were told that without a transplant, Gunner would only live for about one or two years.

A previous transplant, from a donor in Germany, had failed.

The latest procedure was aimed at extending and improving Gunner’s life.

So far, we have ventured to the park, skate park, dog walking, school runs for his big sister and out to feed the ducks

Gunner's mum Holly

The stem cells used were donated to NHS Blood and Transplant in 2008 and were frozen with liquid nitrogen vapour at -150C until a match was found.

Following the transplant in January, Gunner had to isolate for six months to give his immune system time to produce enough white blood cells to fight infection.

Mrs Lewis-Vale said her son is now enjoying the summer and has an “amazing” bond with big sister Daisy, seven.

“So far, we have ventured to the park, skate park, dog walking, school runs for his big sister and out to feed the ducks,” she said.

“Gunner’s cheeky personality is coming right back. He’s a clever boy with an amazing bond with his big sister.”

Gunner (right) with big sister Daisy, seven (NHSBT/PA)

Gunner has mucopolysaccharidosis type I hurler syndrome, a rare inherited condition that prevents the breakdown of certain sugars in the body.

The build-up of sugars can cause problems with physical and mental development.

The first symptom Gunner showed was a pushed out belly button, which was due to sugars building up in his liver and spleen.

“We are eternally grateful to the incredible mother who donated their baby’s umbilical cord,” Mrs Lewis-Vale added.

“The new white blood cells from the donor will hopefully make the enzyme he lacked which breaks down sugar.”

Staff from NHS Blood and Transplant getting the frozen cord stem cells out of storage at NHSBT Filton before Christmas 2023 in preparation for Gunner’s transplant (NHSBT/PA)

The family is now backing NHS Blood and Transplant’s appeal for more people to register as stem cell donors.

Guy Parkes, head of stem cell donation and transplant at NHS Blood and Transplant, said: “We’re delighted to see Gunner playing outside for the first time since he received his stem cell transplant from a cord blood unit donated to our NHS cord blood bank.

“Stem cell transplants are only possible thanks to the generosity of donors and we thank the mother who chose to donate her baby’s umbilical cord more than 10 years ago. We wish Gunner and his family all the best.”