Fun day for charity in support of brave toddler
The family of a young boy who suffers with an extremely rare chromosome disorder is aiming to raise money for the charity which supports him.
Three-year-old Noah Ingram, of North Cove, is said to be one of only a handful of people across the world known to have supernumerary chromosome 8.
The condition affects a child’s development and has left Noah unable to speak and until recently, unable to walk properly.
His family are now organising a fundraising event in Gorleston on Sunday for the charity Unique, which specialises in helping people with similar disorders.
His father Mark, 45, said: “My wife first picked up that something was wrong with Noah soon after he was born, and we were told that he might never walk or speak.
“It was heartbreaking and I remember being in tears when the results came back. We were both upset because it is so rare and not much was known about the condition. We didn’t know how good or bad it was going to be.
“But he is such a lovely little boy and although it sounds stupid, I would not want him any other way, because he wouldn’t be who he is now.”
People who are diagnosed with supernumerary chromosome 8 have an extra part of a chromosome in all or some of the cells in their body.
The condition is so rare that out of the 15,000 people Unique has on its database, only 10 people have a disorder of a similar nature.
Mr Ingram said the charity had been a huge support to his family.
He added: “They put us in touch with other families who had children with similar conditions and we were able to talk together. It really has helped us a lot.”
While Noah has since learned to walk with the help of physiotherapists from the Newberry Clinic in Gorleston, he is still unable to talk.
And now Mr Ingram, and his wife Hayley, 33, who both work at the James Paget Hospital, are learning sign language to communicate with him.
He said: “It can be upsetting because we don’t always know what he wants and that is what me and my wife find so hard at the moment.
“We don’t know what his pain threshold is because he can’t let us know. He has hypertensive joints and some of the positions he can get his feet and ankles into makes me cringe.”
Noah’s cousins Lisa and Katie Allen are organising an event to raise money for Unique on Sunday, September 6, at Gorleston Football Club, in Emerald Park, from 11am to 4pm.
The fun day will include face painting, a raffle, and an auction with the chance to bid for footballs signed by Norwich City and Manchester United players.
For more information on Unique visit www.rarechromo.co.uk.
•Are you raising money for a family member with a rare condition? Email email@example.com or call 01502 712060.
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