A man who was left with life-changing injuries following brain surgery is calling for more funding into brain tumour research.
Rhys Holmes, of Newport, was left with an undetected slow-bleed after an operation to remove a grade 1 pilocytic astrocytoma from his brain when he was just eight, in 1998.
His surgery was life-saving, but over the last 25 years, Rhys, who is now 33, has navigated a life complicated by a rare neurodegenerative condition. Superficial siderosis occurs when long-term bleeding into the central nervous system (CNS) overwhelms the body’s natural defences. This results in toxic iron from the blood to circulate in the CNS, causing hearing loss, motor issues, movement abnormalities and many other symptoms.
The former Cardiff City Youth goalkeeper and musician said managing his condition is a “full-time job in itself.”
Rhys said: “My cognition is intact, however I’m profoundly deaf and have recently had a cochlear implant fitted, which has enabled me to hear again for the first time in over five years. I attend neuro-physiotherapy every week which keeps my mobility issues at bay, having previously been wheelchair bound for a few years.”
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to brain tumours.
He added: “There’s a distinct lack of options for brain tumour patients when it comes to treatment.
“I’m glad I had surgery to remove the tumour, however I think it’s important to let people know that as with most treatment for brain tumours, there are risks and life-changing side effects.”
Rhys is now campaigning alongside the charity Brain Tumour Research to help reach 100,000 signatures on its petition to increase research funding, in the hope of prompting a parliamentary debate.
The charity is calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
Brain Tumour Research wants the Government to recognise brain tumour research as a critical priority. It says the increase in research investment would put brain tumours in line with the spend on cancers of breast, bowel and lung, as well as leukaemia.
Mel Tiley, community development manager at Brain Tumour Research, said: “We are grateful to Rhys for supporting our petition and helping to raise awareness.
“For too long governments have put brain tumours on the ‘too difficult to think about’ pile. Five years after the Government announced £40 million for brain cancer research, just £15 million has been spent. Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose.
“If everyone can spare just a few minutes to sign and share, we will soon hit the 100,000 signatures we need and help find a cure, bringing hope to families whose loved ones have been affected by brain tumours.”
To sign and share the petition before it closes at the end of October 2023, go to www.braintumourresearch.org/petition
