A FAMILY has expressed their relief after a bone marrow donor was found for their tot with just months to spare.
Gunner Lewis-Vale, from Bridgnorth, Shropshire, has Hurler Syndrome – the most severe form of Mucopolysaccharidosis (MPS) Type 1.
The rare genetic disorder affects the body’s ability to break down sugars causing major damage to the heart, liver and spleen as well as chronic pain.
The one-year-old needs a bone marrow transplant before his second birthday in October but no matches were found on the UK register.
Mum Holly and dad Jamie, both 31, and sister Daisy, 4, were all tested but weren’t a match for Gunner.
But with just a few months left, a donor was finally found in Germany and has selflessly agreed to donate.
The transplant, scheduled for next month, will raise Gunner’s life expectancy from one or two years to around 10 and will improve his quality of life.
Speaking today, Holly said: “Finding a donor was a journey of ups and downs, finding out that ourselves and our daughter Daisy weren’t a match was a shock.
“Then discovering that there wasn’t a match currently on the UK register was when we started to worry, especially because he needed a transplant before October 2021.
“Then when an urgent appeal was put out worldwide I don’t think we knew what to think at the time.
“We experienced two matches coming forwards that weren’t a strong enough match for us to put Gunner through the BMT (Bone Marrow Transplant). Then we found a strong match but the donor didn’t respond to the contact made.
“Finally, this month, we had news of a strong match in Germany and the donor has responded to contact and dates were set. We just couldn’t believe it!
“We had always stayed positive thinking that we just hadn’t found the donor yet. So now we’ve got procedure dates it’s certainly sunk in.
Gunner’s condition is extremely rare and affects 1 in 100,000 people worldwide.
MPS Type 1 Hurler is a genetic disorder which affects the body’s natural ability to break down the sugars we produce.
Therefore the body starts to store them in vital organs such as the liver, spleen, heart and brain.
The only treatment available to prevent the body’s sugars attacking Gunner’s brain is through Bone Marrow Transplant.
Holly added: “We are looking at quality over quantity due to the condition causing a shortened life expectancy estimated to be 10 years old.
“He may have mobility difficulties when he’s older alongside bad eyesight and hearing.
“We have weekly visits to Birmingham Children’s Hospital for five hour enzyme transfusions which helps break down sugars already there but as we have been made aware damage already caused by his late diagnosis of MPS Type 1 is irreversible.
“Gunner is amazing with all the hospital appointments and treatments and takes it all in his stride.
“He is loving the attention from the doctors and nurses and smiling all day long!”
