In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Noah from Chepstow in South Wales has a genetic condition called neurofibromatosis (NF1) which causes lesions in the body. During a routine scan in 2021, the 17-year-old was diagnosed with a low-grade glioma. The tumour is inoperable, and radiation is not advised for people with NF1, so his only option has been brutal chemotherapy. As he prepares for second-line chemotherapy, after the first had no impact on the tumour, his family want to share his story to help raise awareness.
Here is Noah’s story, as told by his mum, Shelley…
When Noah was younger, he was tested for neurofibromatosis (NF1). It’s a condition which causes tumours to grow along your nerves. His dad Nigel also has it. We noticed café au lait like birthmarks over his body and it was confirmed that these were the signs of NF1. This meant that Noah would be monitored with lifelong scans to keep an eye on any growths and their development.
In 2016 Noah developed a tremor. He had a scan to check for a trapped nerve, but the results came back negative. The scan showed an unidentified bright object but nothing of concern at that stage.
He lived a normal life, going to school and living how a teenage boy should. His education, like many other school children, was impacted by COVID-19 and when school resumed for Year 10 in 2021 we were all relieved. However, weeks after returning to some kind of normality, in March 2021 a routine scan delayed from 2020 due to COVID, showed a mass on his brain.
He was diagnosed with a low-grade glioma which we later found out due to its location in his medulla, was inoperable. I remember being in the room with a mask covering my face, tears were misting my eyes and Noah was brave-faced asking what we do next.
By September the side effects of the tumour had impacted Noah’s ability to swallow and his gag reflex was almost non-existent. His only option was chemotherapy; radiation for people with NF1 is not advised as it can cause tumour growth.
“From 6 October 2021 for 74 out of a planned 82 weeks Noah faced brutal chemotherapy.”
It battered him. He lost weight and he was exhausted. He’d go to Heath Hospital or if well enough then he could stay at home and the nurses would come to our home.
Part way through, in March 2022, Noah suffered damage to the nerves outside the brain and spinal cord, known as neuropathy. This caused weakness on his left-side and he was forced to use a wheelchair and any further treatment was halted. He was being physically sick and it was obvious the toxicity of the treatment became too much for his body.
A month later we received a devastating blow after a scan showed the chemo had no effect on the tumour, it had continued to grow throughout. He was scanned again in July and now faces second-line chemotherapy.
Although considered low-grade, the consultant told Noah the tumour will kill him due to its location and diffused nature.
Noah is now of the age where he can make his own decisions medically. He maintained he didn’t want any more treatment and wants to live his life. We’ve had conversations as a family which you don’t expect to have with your children. He’s told us what he would want to do depending on how his tumour affects him.
“It’s hard to watch as a parent. Like many families, we feel we are left to advocate for ourselves.”
We do the same research as everyone else, and it all seems useless. We’ve seen treatment which is available in America and isn’t licensed in the UK, but we can’t afford to travel for a trial. It’s disgraceful to think that we can have a vaccine for COVID as quickly as we did, but where is the funding for the same research into brain tumours which is killing more children and adults under the age of 40 than any other cancer?
Despite everything he has been through, Noah has remained as positive as he can be and has worked selflessly to support other people. When he was told about his brain tumour he decided he wanted to provide a place to create memories whilst undergoing treatment and on 1 May 2022 he started fundraising with this purpose.
At the end of 2022 he was recognised as Young Fundraiser of the Year at the Child of Wales awards as well as winning local awards. Despite missing a huge chunk of school due to treatment, Noah was able to sit five GCSEs which he passed with B and C grades. He has gone on to finish his first year at college studying drama.
As he begins chemotherapy again we will support him however he decides to proceed.
I wouldn’t wish a brain tumour on my worst enemy after the diabolical suffering I have seen with my son. You go through the motions of thinking ‘why him, and why not me’, and it’s made me physically sick. This disease is indiscriminate and can affect anyone at any age. We must campaign for more funding so we can research kinder treatments and eventually a cure for all types of brain tumours.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.