A CHEPSTOW boy has launched a fundraising bid to raise money for the Serennu Children's hospital following threats to cut funding.

Noah Herniman, 8, of Bulwark, who suffers from neurofibromatosis type two, which is a genetic disorder that causes tumours to grow along the nerves, will bravely take on a sponsored walk across the M48 Severn Bridge on Easter Sunday.

Type two is a less common type of neurofibromatosis, affecting about one in 35,000 births.

It means Noah has weak bones and joint hypermobility. His knee joints are among the worst affetced and can become very inflamed.

But despite this, the Pembroke Primary School pupil is still intent on completing his fundraising drive for the centre where he has been attending for physiotherapy treatment ,and to see a paediatrician, since it opened in 2011.

He has already raised £637 and he has even asked his parents to sponsor him - for his birthday present on Sunday, when he will turn nine.

Shelley Herniman, 43, Noah's mother said: "Noah has type two which means he has a higher risk of malignancy. Nigel, his dad, is a carrier as am I and my younger sister has neurofibromatosis type 1.

“It’s dormant in Nigel but unfortunately it is active for Noah and he has to be closely monitored. It affects the nervous system and he's riddled with benign growths - there is no cure for it.”

She added: “Our biggest —concern is his eyesight; he went for an optic scan 18 months ago and then six months ago they found clusters of legions on both eyes. If the legions attach themselves to the optic nerve he will lose his eye sight an there’s nothing that can be done.”

This isn't Noah's first fundraiser for the charity as he donated £100 from selling bangles he made from loom bands last year. But the response to his more recent effort has blown him away, she added.

“He has been amazed at the response on his just giving page, he couldn’t believe people were going to give him money to walk over the bridge to help other children," she said.

Lisa Pearson, business development manager for the Sparkle Appeal, said: “On behalf of Sparkle, we would like to thank Noah and his family for their hard work and efforts in fundraising for Sparkle. Noah is an exceptional child and his passion for helping others is remarkable.

“We would like to wish him all the best in his walk and look forward to supporting him in his future ventures.”

The Argus has previously reported that Newport council are no longer proposing to move its disabled children's team from the Serennu Centre to the city's civic centre. But a petition, which has 135 signatures, is trying to stop Torfaen council’s plans to redesign its disabled children's service which would see social workers move out of the centre and back within the borough.

Monmouthshire Council said they do not have any staff from their children’s services based at Serennu. They said some children with the disabilities team receive services from health service staff at the centre, but the council doesn’t have any direct involvement and does not fund it.

To donate to Noah's effort visit www.justgiving.com/shelley-herniman