Linslade mum Amy Hughes never thinks ‘Why me?’ even though her 17-month-old son Seth was diagnosed with cystic fibrosis and reflux when he was just three weeks old, and her husband Damian is recovering from a devastating stroke.
She says: “We were told twice last year that Seth wouldn’t make, 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 – now that’s a big deal.”
Amy, a teacher at Mary Bassett Lower School, has taken looking after Seth in her stride. He’s on eight different medicines every day and has to use an inhaler four times a day, as well as two different nebulizers, with twice daily physio sessions.
In addition he has to take enzymes with everything he eats and drinks.
He was also admitted to hospital on five occasions in the past year, which is difficult for his four-year-old brother.
“Sidney’s a sensitive soul,” Amy concedes. “It’s been really hard for him because we never know how long we’re going to be away.”
Fourteen-year-old Freddie is far more relaxed about the situation and adores his little brothers.
Amy and Damian knew something wasn’t right with Seth after he was born because he started losing weight.
“We ended up in hospital because everything went straight through him,” she recalls.
“Then the results of the heel prick test confirmed he had cystic fibrosis. My husband is a science teacher so he had some knowledge of what it meant. I’d heard of it and knew it affected the lungs and other organs. We were shocked, bewildered – but the nurse at Great Ormond Street was brilliant. She directed us to the Cystic Fibrosis Trust website where everything is always up to date. We didn’t have time to worry or ponder.
“And they email us every week with the latest news and developments.”
The Hughes were just getting used to Seth’s condition when Damian had a stroke.
“We have lots of family support on both sides,” Amy says, and admits to resorting to bribery and corruption when Seth won’t take his medicine.
“He watches lots more telly than the other two,” she smiles. “He’s at that age when he finds it difficult to keep still but at least we have a new nebulizer that takes half the time of the previous one.
“He’s a very endearing little boy. He’s had so many hospital admissions and that’s probably shaped his personality.
“He has significant reflux – not a good combination with cystic fibrosis - but he’s had since he was tiny. He’s now on medication to neutralise the acid, to stop it being produced.
“We’re feeling cautiously optimistic.”
Proud grandma Linda Griffiths describes him as “a brave little soldier.”
The Hughes are keen to raise funds and awareness of the condition and recently held a very successful quiz in the Mary Bassett school hall which made more than £500. They hope it’s the first of many.
“It feels good to be able to give something back,” Amy says. “The more people know about it, the more money will be donated to for research and there are already encouraging results from clinical trails. Some strains have been cured but sadly not Seth’s.”