Eighteen-month-old Gunner urgently needs to find a lifesaving stem cell donor for his condition
The family of an eighteen-month-old from Highley, diagnosed with a life-limiting metabolic disease, are raising urgent funds to add more donors to the Anthony Nolan stem cell register and give their little boy the best possible chance of survival.
In March 2021, Gunner Lewis-Vale was diagnosed with a rare mucopolysaccharide disease, MPS Type 1 Hurler, which means his body cannot convert sugar into necessary protein in the body. Although it was discovered at a relatively early stage, Gunner’s doctors have said his best chance of survival is with a stem cell transplant before his second birthday.
The smiley toddler, who loves other children, clapping and high-fiving his nurses, comes from a loving family of four: mum Holly, 31; dad Jamie, 31; and a four-year-old sister he is “besotted” with, Daisy. As Gunner does not have a close enough match in his family, he needs to find a matching, unrelated donor through the stem cell register.
Currently there is no match for Gunner on the UK stem cell register, so Gunner’s family have launched ‘Gunner’s Goal’, a fundraising appeal to help Anthony Nolan send thousands of swab packs to people who have applied to join the stem cell register, increasing the chances of people like Gunner finding his match. They are also urging more young men aged 16-30 to join the Anthony Nolan register, as they’re the most likely to be chosen to donate, but make up just 18% of the overall register
Holly says: “Gunner struggled with heavy breathing since he was born and his hearing was limited to 50 decibels. When he was six-months-old his head started growing at an alarming rate. We initially struggled to see anyone due to Covid, and I thought I was just being a mum in lockdown, can’t go anywhere and completely overthinking it.
“Finally, we managed to see a healthcare professional at a walk-in centre in January, who referred us straight to Telford Hospital. By a stroke of luck, the consultant on shift had seen a child with MPS Type 1 before, and was pretty confident that’s what Gunner had. Tests were ordered and the diagnosis was confirmed. A week later we were in Birmingham Children’s Hospital to start enzyme treatment.
“I signed up as a stem cell donor last year, after seeing an appeal for Ashley Cain’s daughter, Azaylia. At the time we didn’t know we’d be in the exact same position.
“Joining the register is something you’d maybe never think of doing until it affects someone you know. But all these people are waiting for their match, including my baby. Please consider joining, or funding a new donor to join the register if you’re over thirty one. You’ll never realise what you’re giving to a family, just to have those few more years of life.”
Enzyme infusions are necessary for patients with Gunner’s diagnosis, as they help the body break down sugars.
Holly says: “All the damage before diagnosis has already been done, but we’re trying to stop further damage. We still consider ourselves so lucky that we saw that consultant by chance!”
While weekly enzyme infusions at Birmingham Children’s Hospital keep Gunner stable, the only hope of prolonging his lifespan lies in a stem cell transplant, and his medical team need to find a matching donor before his second birthday.
“At the moment, we’re in hospital two or three times a week’ says Holly, ‘I’m mastering the route to Birmingham!” she laughs.
“Happiest little boy” Gunner undergoes transfusions while watching photos and videos of his older sister Daisy, “he is besotted by his sister and could happily watch her for hours” says Holly.
With a roster of fundraising events planned around the Shropshire area for May and June, it’s going to be a busy time.
“This is now my main focus and mission” says Holly.
The impact of the coronavirus pandemic on Anthony Nolan’s fundraising activity and a large number of people joining the charity’s register in early December means there are currently around 14,000 potential donors waiting for a swab kit. The charity had been overwhelmed with support and needed to raise up to an extra £500,000 to add people to the register, from ordering more swab packs to analysing completed swabs in its laboratory.
Any one of the 14,000 people who have applied to join the Anthony Nolan could be a match for Gunner or one of the 2,300 patients in the UK, who need a stem cell transplant from a donor each year. It costs £40 to recruit each potential donor to the register, so Anthony Nolan relies on financial support.
Henny Braund, Chief Executive of Anthony Nolan says: “Finding a match would mean everything to Gunner, his mum, dad and Daisy. We’re doing all we can to support the family and find a stem cell donor to give Gunner a second chance of life.
“A perfect storm of the coronavirus pandemic, and a surge of 40,000 incredible people who have been inspired to join the Anthony Nolan register recently– by patients, like Gunner – means that we’re in urgent need. The best thing people can do is support Anthony Nolan’s work financially. By giving anything, together we can add all potential lifesavers to the register, and give patients like Gunner hope.”
Please visit www.gofundme.com/gunnersgoal to support Gunner’s Goal