Mum of Newmarket teenager Niall Kavanagh who died weeks after brain tumour diagnosis calls on Government for more funding into research

A grief-stricken mum, whose teenage son died just weeks after being diagnosed with a brain tumour, is supporting a charity’s calls to increase Government funding in research.

Claire Kavanagh’s son, Niall, was diagnosed with a brain tumour in October 2021, after being rushed to A&E with sudden forgetfulness and an inability to speak.

The 19-year-old, of Newmarket, had been unwell for several weeks, but his symptoms were attributed to a suspected virus or ear infection. He died just three weeks after diagnosis.

Claire, of Balsham, said: “The first sign that anything was wrong came after Niall played a game of football in September 2021. He rang me that night and said he’d just been sick and collapsed and was going to go to A&E.

“He actually went to see out-of-hours doctors at Addenbrooke’s Hospital on two consecutive Saturdays, but was looked over and sent home with a suspected virus or ear infection.”

With Niall’s symptoms persisting several weeks later, and him saying he was also feeling really sleepy, Claire made him a GP appointment.

Niall’s condition deteriorated drastically in just a few days, leaving him unable to walk or talk. He never made it to the GP, instead he was rushed to hospital, where he died three weeks later on November 1.

Claire, who is a secretary at Newmarket Equine Hospital, said: “Alarm bells really started ringing when Niall phoned and couldn’t remember talking to me. At first I thought he was joking, but he was scrolling through his phone in disbelief.

“Niall’s brother went over to his house the same day and called to tell me there was something wrong and he was going to put him to bed. When I got there, Niall was conscious and sat up gesturing, but he couldn’t speak.

“In the end, we lifted him into the car and drove him to Addenbrooke’s ourselves. He couldn’t walk or talk and the staff there thought he’d taken something.

“Then there was talk about him having had a seizure because he just wasn’t responding. He was able to move but he couldn’t coordinate anything.

“Eventually, he was taken for a scan and we were told there was a lesion on his brain. He had emergency surgery and the surgeon said he didn’t think Niall was going to make it through the night.

“He told us he’d never seen anything as aggressive as Niall’s brain tumour and left us with almost no hope. I had to go home and tell Niall’s two younger brothers they needed to say goodbye.”

Niall, who worked at Newmarket Racecourse, did recover, and for three weeks was able to talk, use his phone and breathe on his own. However, after a procedure to remove a shunt from his head, Niall failed to regain consciousness.

Claire said: “He was returned to the ICU and when I saw him the following morning, he wasn’t responding like he had before. He just gradually faded after that. I was told Niall’s brain was swelling and they couldn’t do anything to stop it. Essentially, he was dying.

“The surgeon did some tests to determine brain stem death and told us he had died. I knew what the results were going to be but prayed he’d pull through. I wanted a miracle but his surgeon agreed that having him back for those three weeks was a miracle in itself.”

Now Claire is campaigning alongside the charity Brain Tumour Research to help its petition to increase research funding reach 100,000 signatures, 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 £35million a year by 2028.

It wants the Government to recognise brain tumour research as a critical priority and 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.

Claire said: “I’ve signed the petition and encourage others to as well because money for brain tumour research is so desperately needed. I’ll never understand how Niall went from being a fit, healthy 19-year-old, playing football and living with his girlfriend, to dying three weeks after diagnosis. Losing him has destroyed my life and I don’t want other families to endure the same heartbreak.”

Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1 per cent of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.

Charlie Allsebrook, community development manager for Brain Tumour Research, said: “What happened to Niall is a tragedy, to lose somebody so young and so quickly is devastating.

“We’re very grateful to Claire 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