Denise Brinton, Staysafe PPE Founder and Aunt to Gunner Lewis-Vale is hoping that her fellow Made in the Midlands members will help to prolong her nephew's life. Gunner has been diagnosed with MPS Type 1, a life-limiting disease that can be slowed by weekly blood transfusions and a bone marrow transplant. Many people have already signed up to be donors, sent funds to finance research, and planned fund-raising events to help with the worldwide search for a donor.
18-month-old Gunner was diagnosed in March 2021, and unfortunately, there are currently no compatible donors registered in the UK, even amongst his family. Gunner needs a bone marrow transplant before he is 2 in order to limit the damage to his brain. Time is running out and the race is on!
Denise said:
“There had been ongoing concerns for Gunner’s health for some time as he has an umbilical hernia, hearing issues, and breathing problems. Though concerns were raised last year with his GP, his parents struggled to get him seen due to COVID-19.”
However, when Gunner was rushed to hospital with a virus and a 40-degree temperature, the A & E doctor recognised his symptoms and immediately sent him for further tests. His condition was later confirmed, affecting only 1 in 100,000 children.
Denise added:
“It’s still a lot for our family to take in, however, we have to act quickly so we are now urging people to come forward, register, and apply for a bone marrow test so we can find a match.”
Gunner’s consultant and the Anthony Nolan Trust have checked the donor register and are now looking in Europe as there is no UK match so far. He is now bravely having enzyme transfusions each week which last 5 hours, and he also attends several different weekly appointments including X-rays and ECGs to make sure his heart is strong enough to take the treatment. He has also been fitted with a hearing band which has opened up a whole new world for him and he is making great progress with his speech! These treatments ensure that Gunner will have the best, most comfortable life possible until a donor is found.
Gunner’s family and friends are working hard to help raise funds for his cause. On 1st July his uncle, Ben Vale and friend Andy will be doing a sponsored challenge to sit on every seat in the Shrewsbury Town football stadium, of which there are 9800 in total. It’s the ‘Ben and Andy’s Bums on Seats Challenge’. Staysafe PPE and many other local businesses are sponsoring the event, including donations and all-weather clothing.
You can help save Gunner’s life by doing all or one of the following things:
1. Signing the Anthony Nolan register to be a donor if you’re aged 16-30
Anthony Nolan, saving the lives of people with blood cancer
2. Signing the DKMS register if you’ve aged 16 -55 DKMS UK with the option to sign the register from other countries at the bottom of their homepage. http://www.dkms.org.uk/gunner
3. Help us raise funds for a match with DKMS UK & Anthony Nolan test kits. They are free-issue tests for potential donors but cost the charities £40 each to process. Each person that does the test could be a match and help_us_save_gunner or other children like him.