Darren Greenwood and friends from Attleborough and Wymondham to scale three peaks for little Hugh, who has a rare genetic disease called Prader-Willi Syndrome
His son was born with a disease so rare that fewer than one in 15,000 children have it.
And now a father, originally from Attleborough, and a group of friends are climbing a trio of mountains to raise money and awareness of Prader-Willi Syndrome.
Darren Greenwood, 36, who now lives in Manchester, and seven friends from around Attleborough and Wymondham are planning to do the Yorkshire Three Peaks Challenge, which involves scaling Pen-y-ghent, Whernside and Ingleborough in under 12 hours.
Mr Greenwood’s son Hugh, who is 10 months, was diagnosed with Prader-Willi Syndrome when he was just five weeks old.
The genetic condition came about because Hugh inherited two Chromosome 15 pairs instead of one, and means he may suffer from symptoms including decreased muscle tone and lack of hormones, a short statue, learning disabilities and autism throughout his life.
But Mr Greenwood said the one effect he and Hugh’s mum, Jayne Cosby, were fearing the most was hyperphagia - excessive hunger and inability to feel full.
He said: “Just stop for a second and imagine always feeling hungry and it never ever going away, and you are on a strict calorie-reduced diet with no carbs, no sweets, no crisps, no chocolate, no cake, even limited fruit due to sugar content.”
Mr Greenwood said that while Hugh was weak and floppy compared with other babies, he was making great progress with daily physiotherapy sessions.
He said: “Not a day goes by that Hugh doesn’t make me smile or laugh. He is a fighter and I am so proud of what he has achieved, of who he is and what he will become.”
Mr Greenwood’s friends taking part in the challenge are Paul Harrison, Matthew Mann, Matt Harrison, Jason Hugguns, Rob Leach, Ollie Campbell and Chee Lo.
He said he was looking forward to the September 2 event, and had walked more than 350 miles in training since March, losing more than two stone in weight.
Mr Greenwood said: “We’ve all been putting in the training miles and feel more than up for the challenge.”
Donations can be made online at www.justgiving.com/fundraising/3hillsforhugh and will go to the Foundation for Prader-Willi Research UK