Charlie’s mum speaks out on DIPG Awareness Day

2 min read

Today, on DIPG Awareness Day (17th May), the mother of an 11-year-old boy with an inoperable diffuse intrinsic pointine glioma (DIPG) is helping to raise awareness of this aggressive paediatric tumour type and highlight the injustice of the lack of research funding into the disease.

Charlie Quarterman, from Northamptonshire, was diagnosed two months ago after his parents, Sophie and Clive, noticed that he was struggling to close his right eye. His condition was initially put down to Bell’s palsy but further investigation revealed a cancerous mass growing in his brain stem.

Sophie said: “From being diagnosed on 22nd March, Charlie’s condition deteriorated quickly. His mobility was reduced and he needed a wheelchair for longer distances due to loss of balance and stumbling. On 27th March, during a CT scan, doctors noticed a build-up of fluid on Charlie’s brain and he had surgery to fit a shunt.

“After the operation his symptoms further progressed; he lost the ability to walk and sit for a long time, as well extreme fatigue and slurred speech. His vision became doubled which meant he couldn’t message his friends, and he lost his independence.”

Charlie (pictured top with parents, brother Kenny and sister Alissia) underwent high-dose radiotherapy which meant he had to cut his long hair but helped him regain some mobility.

While his parents search for a clinical trial to save their son, the schoolboy who loves computer games and Marvel films, and dreams of becoming a zoologist, has written a bucket list of things he has always wanted to do. It includes, “a zoo keeper experience, a beach holiday with my cousins, go back to school and be with my friends, and be in a movie”.

Sophie said: “We lose over a class of children each year due to this type of brain tumour. Having a son with brain cancer has taught me there is a cruel and unfair split of research funding into this disease compared to other cancers. All the money in the world won’t help Charlie now, but as a family, we can raise awareness so that future generations aren’t told to go home and make memories.”

A crowdfunding page has been set up to help Charlie fulfil his bucket list wishes. Click here to donate.

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