At the age of fifteen, you would never imagine that devastating news was right around the corner, for most it will never become reality but for Noah it did. After being diagnosed, the Neurologist said, “Go away and enjoy summer,” how could Noah and his family do that?
Noah Herniman is a 17-year-old, Doctor Who crazy, drama student who never expected to receive news he had an inoperable brain tumour. Noah suffers from a condition called Neurofibromatosis type 1, (NF1) which is a genetic condition that causes tumours to grow along your nerves. The tumours are usually non-cancerous (benign). Although this condition can cause brain tumours, it is not the cause of Noah’s. After being diagnosed in June 2021 Noah’s life drastically changed, Covid-19 making things even harder, his treatment plan swiftly began in October 2021, and he underwent 74 weeks of chemotherapy. The tumour is called a low-grade glioma, which is positioned in the brain stem, “it’s a good tumour in a bad place,” which is how the family describe it. Any growth in this area, no matter how small can be detrimental to Noah’s condition. Growth can cause the tumour to push on parts of the brain which could cause complications. All low-grade tumours become high-grade over time.
Noah’s chemo was withdrawn in March 2023, as it was taking too much of a toll on his body. Chemotherapy comes with lots of life-changing side effects, although it is hoped to shrink the tumour it often makes people feel worse during the course. Noah has had what he calls “rude unwanted side effects,” such as; Joint pain resulting in the partial use of a wheelchair, headaches, hiccups, flatulence, pain, trouble breathing, fatigue and slight confusion/muddling of words. These are all things that would affect anyone’s day-to-day life but are extremely hard on a teenager. Although many would stop day-to-day life because of these gruelling side effects, Noah was determined to carry on, he has managed to remain in school and go on to college where he is now studying drama-preforming arts.
“It’s an unwanted lodger who won’t pay rent and doesn’t understand it’s eviction notice,” is how Noah explains his tumour. His humour has certainly not been lost despite what he’s gone through.
There is no prognosis for Noah and many people with tumours like Noah’s are given ‘a five-year window,’ a time frame on their life expectancy, the mortality rate for brain tumours isn’t promising, “hearing that news was like a bomb being dropped.” The survival rate for people who have had a brain tumour for 5-10 years is only 11%.“ We can live in hope,” said Noah’s mum, Shelley.
Noah has a passion for fundraising, and he has been raising money for various charities since he was seven years old. During his treatment, he decided that he wanted to set up a charity of his own but one that was different from other cancer rest bite charities. There is a Facebook page where people can follow Noah’s Journey, find news on his health, upcoming fundraisers, etc. Noah is a character and is adored by the people in his local community. The way he has kept his head high through this time is beyond admirable. Noah was also presented with the “Young Fundraiser” award at the Child of Wales Awards 2023, which he was honoured to win.
There are 130-140 different brain tumours, and it has become the highest rising childhood cancer at 26%. Brain tumours kill more children and adults under 40 than any other Cancer. Although funding has improved into finding cures for cancer, there is a huge lack of funding into the research of brain tumours. There has been a lot of talk in parliament over the last few months into the funding for this research, an article taken from Sky news shares, “MPs are demanding action to make research into brain tumours a ‘critical priority’, after a landmark figure showed no change in mortality rates over the last decade”.
The government have promised a total of £40 million since 2018 but nothing has been agreed, Derek Thomas, chair of the all-party parliamentary group on brain tumours, urged the government to ringfence £110m. Because of the lack of research into treatments, families are travelling abroad to seek help, this is costing a substantial amount of money, and many families are unable to pay for this and many of the treatments offered abroad and classed as a “trial” as the treatments are fairly new and have only been tested on a small number of people compared to something on the scale of Chemotherapy. Noah decided very early on that he did not want to be one of the children shipped abroad to trial a new drug, “I don’t want to be an experiment,” he said. Throughout Noah’s journey his family have had some difficult conversations about Noah’s life and well-being, Noah’s mum described that Noah is very forward during these conversations and says it is how it is. “I do not want to live a life if I can’t do anything for myself,” Noah said while describing how difficult everyday life can be while undergoing treatment. Noah does not want to “be an experiment” but he did say that if a trialled and tested treatment came along, he would take the opportunity without a doubt.
The charity that Noah set up is called ‘Noah’s Retreat,’ its aim is to be a place where people can go to make lasting memories. There are many charities such as ‘Make a wish’ that offer life-changing memories to families; however, they focus on rest bite, care and bereavement support. Noah wanted to do something for the children that are suffering while they are still alive, to make lasting memories with their families, not for their families to have time away after they have passed on. So far Noah has raised a huge total of £30,000, this is a figure that was unimaginable to him when he started this journey however with hard work and dedication, he has exceeded his expectations.
Over the past few years, there have been countless ways in which Noah has raised money for this special cause, he has taken part in charity walks, family fun days, raffles, and guess the name of the stuffed toys. Alongside all these fundraisers for “Noah’s retreat”, he has also managed to raise money for other charities. “Noah you are a credit to our community and your parents! Stay strong and keep smiling,’ Niaomi Stephine, a local, wrote on Noah’s Facebook page.
His journey is far from over, but he proudly rang the bell at his latest fundraiser last Saturday, to signify the end of his Chemotherapy. He is already set himself an interim target of £35,000 which he hopes to reach soon. “I’ve got no clue how I stay so positive, I just get on with it” said Noah when asked how he stays so humorous and brave.
Noah has big plans set out for himself, he is currently writing his own Doctor Who, ‘minisodes’, which keeps him busy, for now, but he has his work cut out as he is dreaming of attending the 60th anniversary Doctor Who Premier, which is held by the BBC, Noah has met a few cast members but is yet to have a good chat with his favourite actor, David Tennant. He’s managed to miracles happen so far along his journey, let’s hope he will manage this one too!