A TEENAGER from Chepstow who is living with an inoperable brain tumour has been given a boost in his campaign to set up a retreat to offer respite care for people going through similar situations.

Noah Herniman, 16, is well known across Gwent for his fundraising exploits, and was named the 'Achiever of the year' at the South Wales Argus Pride of Gwent Awards in 2019.

Noah, who suffers from a condition called neurofibromatosis, was last year diagnosed with an inoperable tumour at the core of his brain.

Neurofibromatosis is a condition where tumours grow on a person’s nerve tissues. It also results in a depleted immune system, heightening the risk posed by illnesses such as coronavirus.

Noah is currently gearing up for more arduous chemotherapy treatment to stabilise the growth of his tumour, his family said.

However, he is also committed to funding a purpose-built cabin for families in a similar position to take time away from hospital.

“Noah has made it clear to us, he doesn’t want us to raise funds to send him abroad for treatment that is really non-existent at the moment,” said mum Shelley.

“He says to us: ‘I want to live here and now, mum.’

“So, this idea of raising money for a retreat for people is his idea and it’s really important to him.

“He believes it’s vital that people have time to make memories. He always says to me: ‘You don’t make memories sitting in a hospital or even your own living room - or at least ones that you want to remember’.”

Chepstow Racecourse has committed to helping Noah’s fundraising efforts with their Family Fun Day in Support of Noah’s Journey on Bank Holiday Monday, August 29.

The six-race flat meeting will offer a wide variety of family entertainment, including fun fair rides, dodgems, children’s rides, face-painting, bungee trampolines, bouncy castles, treasure hunts and more, to help raise funds to help Noah’s campaign.

Kids go free on the day and families can also bring picnics to the event, but there will be no alcohol.

“This race day is really important to him and to us,” said Ms Herniman.

“It means so much to him to get this off the ground, which he knows is going to be a huge task. He has started a crowd-funding page, does various events like spin the wheel and many different things, and now we have a day at the racecourse.

“Raising awareness and getting some momentum behind this is so crucial to him.

“Noah is very quirky and sometimes he doesn’t realise how funny he is.

“I have said to him ‘Are you sure you want to do this? It’s going to be a lot of work’. And he laughs and says ‘Yes, mum, I know. But it’s really important.’

“He is a very humble boy and down to earth. He doesn’t feel like he is doing anything extraordinary, perhaps because he's been involved in his community, helping with fundraisers, for years.”

Chepstow Racecourse executive director Phil Bell said: “Noah is an inspirational young man and we are delighted to be able to support his campaign.

“Once again, it shows that horse racing and charity events offer a perfect partnership opportunity, but particularly for campaigns like this one which is all about generating awareness and visibility.

“We are very much looking forward to hosting Noah and his family and it should be a great day for everyone.”

You can find out more about Noah’s fundraising, or donate, at justgiving.com/crowdfunding/shelleynoah-herniman