Walk into Shelley Herniman’s home and you’ll immediately be hit by the intense smell of chocolate. When Easter comes around Shelley’s son Noah gets to work on donating as many eggs as he can muster for various charities, but for Noah this year is very different.
The 16-year-old who suffers with neurofibromatosis, meaning tumours grow on his nerve tissues, was diagnosed with an inoperable benign tumour at the core of his brain last year following the cancellation of his routine MRI scans. He is now undergoing intense chemotherapy. You can read an article on Noah's diagnosis here.
Despite all of this, Shelley and the Chepstow community where they live are continuously amazed by Noah who this year isn’t only donating thousands of eggs to charity again, but also is kickstarting plans for his own charity to help families like his at the toughest time of their lives. “He wants to help families with severely ill children have a place to go and get away from it all,” Shelley explained proudly of Noah’s efforts to try to find three retreats for families affected by traumatic diagnoses.
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The abundance of eggs in Shelley’s home - 600 of which will go to Llamau and 400 to Cyfannol - are reminders of the tenacious and unending generosity in which Noah continues to live his life. “His life has been so full up to now,” Shelley said. “But of course that has completely changed for him - it’s had to change. He gets frustrated with it at times because the tumour has taken his independence from him.
“His life is now at home. He very rarely gets to go to school. Today he has been able to get to school but he’s in from 9am to 11.30am and then we’re off to appointments at the hospital. The fundraising is great for him too. I think it’s really given him a reason not to give up.”
The family spoke in February about the impact of soaring cost of living when looking after an ill child. Heating bills have hit £10 a day as the cold snap coincides with sky-high energy charges. Now is clearly one of the worst moments in recent UK history to fall on hard times.
“If you are in a situation like ours then funding becomes very low,” Shelley said. “It isn’t a priority for families with sick children. You are stuck in the four walls of your home and then hospital. That’s why Noah wants to do this.
“We have sat in hospital and seen families being told there is no other option for their child. Noah has made it clear to me and his dad that he doesn’t want us to fundraise to have additional treatment if the chemo doesn’t work. He wants to leave it at that stage and focus on enjoying his life.
“When you don’t know what is going to happen tomorrow or in the coming weeks and months, being with the people you love and sharing memories with them is invaluable. A brain tumour might be low grade but chances of survival for a long time in many cases is not good. It’s so important people have places to go and get away.” You can see Noah’s fundraiser for the retreats here. After the fundraiser he hopes to set up his own charity to raise further funds for respite for young patients and their families.
Noah is currently taking a break from chemotherapy as Shelley says it has damaged some nerves in his legs making it difficult for him to walk. Shelley says for Noah, his circumstances have made his charity work even more important to him.
“He would like to see if he can get three locations for families. A static caravan would be a great start,” Shelley said. “He’d love to be able to give families something that stays with them forever.
"After that we hope we can get a charity going too. We'd love to try and speak to someone who could potentially assist us with the direction of that.
“Noah firmly believes that everyone has got something to give and he lives through that. He often says to me: ‘It doesn’t have to be a huge effort to make a big difference, just a small gesture can make someone smile.’ We know what he’s like, he never stops. My house stinks of chocolate.”
