Boy, 5, diagnosed with deadly rare condition has life transformed after stem cell transplant from umbilical cord blood | UK News

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A five-year-old boy has been able to leave his home for the first time in six months after he received a stem cell transplant made from a baby’s umbilical cord blood which was donated in 2008.

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, the toddler would only live for a year or two.

But after a previous transplant from a donor in Germany failed, Gunner found a match with stem cells that were donated to NHS Blood and Transplant in 2008 and frozen with liquid nitrogen vapour at -150C.

He underwent the surgery in January and then had to isolate for six months to give his immune system time to produce enough white blood cells to fight infection.

But now Gunner’s life has transformed as he enjoys the summer with his seven-year-old sister Daisy.

EMBARGOED TO 0001 SATURDAY JULY 20 Undated family handout photo issued by NHS Blood and Transplant of five-year-old Gunner Lewis-Vale with his seven-year-old sister, Daisy - their mother, Holly Lewis-Vale, said the pair have an 'amazing bond'. Gunner was diagnosed with a rare genetic disorder in March 2021, when he was about 17 months old, and 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
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Gunner and his sister Holly, 7, have an ‘amazing bond’, their mother said. Pic: PA

Mrs Lewis-Vale said: “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 cheeky personality is coming right back. He’s a clever boy with an amazing bond with his big sister.”

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.

EMBARGOED TO 0001 SATURDAY JULY 20 Undated handout photo issued by NHS Blood and Transplant of staff from NHS Blood and Transplant getting the frozen cord stem cells out of storage at NHSBT Filton in preparation for five-year-old Gunner Lewis-Vale's transplant. The cells were harvested from the blood in a baby's umbilical cord, which was donated in 2008, and has been frozen at temperatures of -150C for 15 years. Issue date: Saturday July 20, 2024.
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Frozen cord stem cells are taken out of storage in preparation for Gunner’s transplant. Pic: PA

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.”

Gunner’s family are now encouraging more people to register as stem cell donors.

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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.”



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