A Leighton Buzzard couple are braving the blustery hills of the north to help their beloved grandson fight Cystic Fibrosis.
Linda and Keith Griffiths are taking on the Coast to Coast challenge from St Bees, Cumbria, to Robin Hood’s Bay in honour of their “little soldier”, Seth Hughes, aged two, who was diagnosed with the lung and digestive condition at just three weeks old.
The couple are walking all 192 miles in the hope of raising £500 for the Cystic Fibrosis Trust, as more breakthroughs in research could help increase Seth’s life expectancy.
Linda, 59, said: “Seth is a two-year-old just like any other two-year-old but he’s got this dreadful condition.
“He needs medication on a daily basis, has regular check-ups, and has previously been in intensive care.
“The charity is little known, and people have sometimes heard of Cystic Fibrosis, and ask ‘is that just the lungs?’ We want to raise awareness as well as raising money.”
Brave Seth experiences build-ups of sticky mucus in the lungs, and as Linda explains, a chest infection could be “fatal” if not dealt with staight away.
The condition also causes mucus in the pancreas, making digesting food extremely difficult, and mum Amy has a cupboard full of special medicines Seth must take.
Linda said: “Everything he puts in his mouth has to be measured, as he can’t digest fat. I have a little calculator so I know how many grams he’s had. He has all sorts of antibiotics, but his mother, Amy, always tries to include him when she goes out, and doesn’t wrap him up in cotton wool.
“Seth is a lot of fun – and he also has his temper tantrums like any toddler. He’s very bright, you quiz him about dinosaurs and I’m surprised – I can’t pronounce the words he comes out with. It’s just in every day there’s a couple of hours that normal two-year-olds don’t need to have...”
But Seth’s condition isn’t the only battle the Hughes family have faced, as while they got used to Seth’s Cystic Fibrosis diagnosis, his father Damian suffered from a stroke.
Speaking to the LBO in March 2017, Amy said: “We were told twice last year that Seth wouldn’t make it, and they didn’t think my husband would either. That sort of adjusts your thinking. But we’ve never been materialistic and we take pleasure in the little things, we enjoy small stuff like playing in the garden – that’s a big deal.”
Now, determined to help their brave family, Linda and Keith will be raising awareness with T-shirts and collection tins, as they visit northern towns and villages during their two-week travel (April 12 - 29). To prepare, the couple’s practice locations include Ivinghoe Beacon, as Leighton Buzzard’s terrain is certainly not very hilly.
Linda said: “Every step of the way we will be thinking of Seth and the Trust’s ‘Fighting for a Life Unlimited’ campaign. Currently, half of those with Cystic Fibrosis will not live past the age of 41.
“I would like to think Seth could get a little closer to 60...”
Damian and Amy, a teacher at Mary Bassett Lower, also live in Leighton-Linslade and Seth has two older brothers, Sidney, five, and Freddie, 15.