Family’s bone marrow plea for little boy

Gunner Lewis-Vale was diagnosed in March with MPS Type 1, which is rare genetic disorder meaning he cannot breakdown his body’s sugars, shortening life expectancy. 

His mother, Holly Lewis-Vale works in Kidderminster and is calling on the town to sign up to the stem cell donor register as currently there are no bone marrow matches for Gunner.

Gunner is in desperate need of an urgent bone marrow transplant. With no match in our family or on the UK register there is now a worldwide search.

The family have set up a gofundme page called ‘GunnersGoal’, which is at nearly £7,000, to raise money for blood cancer charities Anthony Nolan and DKMS to help add new donors onto the stem cell register.

Holly said: “Gunner is such a strong little boy who is taking everything in his stride. I am just trying to take each hospital trip and day as it comes. We try not to think too much about the road ahead but concentrate on spreading awareness every day.

“His diagnosis was a long time coming, my husband and I had had a few concerns and were unable to see a doctor or health care visitor due to Covid. Gunner was taken to hospital after falling ill and I took the opportunity to express these concerns while we were there. It was just chance the consultant had seen this rare condition only once before. He put all symptoms together sent off for the tests.”

Holly and Jamie, also have a four-year-old daughter, said they were concerned as Gunner had a large head circumference, flat nose, breathing problems and constant chest infections.

The family are raising funds for blood cancer charities Anthony Nolan and DKMS to help add new donors onto the stem cell register.

The brave youngster needs to have a bone marrow transplant before his second birthday in October to give him the best chance of survival and prevent Gunner suffering brain damage.

Holly added: “We were just taken back when we found out about there not being a match. You just assume that there will be. That’s what made us want to make GunnersGoal and help Gunner and as many others in his situation by raising awareness of the condition and the donor register.”

There is no cure for MPS Type 1 but Gunner is being treated at Birmingham Children Hospital, receiving weekly enzyme transfusion which makes the condition more manageable.

Already the family have rallied up a lot of support with Highly Primary School wearing blue on May 17 and organising a raffle; The Small Club, a children’s clothes shop in Bridgnorth, organised a treasure hunt on May 1; a group are cycling from Bridgnorth to Edinburgh on June 5 and another group are walking the Three Peaks on June 26.

For more information about Gunner visit the Facebook page or to donate visit their gofundme page.