A Leighton-Linslade family is holding a garden open day for the Cystic Fibrosis Trust to help their brave son and grandson.
Seth Hughes, three, was diagnosed with the condition at just three weeks old, and while other tots can run around and play, the brave lad loses valuable time each day as he faces rounds of physio, nebulisers and medication.
The condition affects Seth’s lungs and digestive system - and a chest infection could be fatal - yet despite this, he is adventurous, spirited, and lives his life to the full.
To help fund research for Cystic Fibrosis, his mother and grandmother are now opening their gardens to the public and inviting residents to come to Birdsong, 1 The Glen, Plantation Road, and 33 Rothschild Road on Sunday, July 7, from 2pm - 6pm.
There will be drinks, cakes, plant stalls, rock painting, garden games, toys to play with, and more. All donations to the charity are greatly received.
Grandmother, Linda Griffiths, 60, said: “Seth is amazing. He is incredibly strong and he’s a daredevil. He’ll climb to the top of a climbing frame and would jump off if you let him - but his parents always keep a close eye on him!
“You would never realise anything was wrong with him.
“I think the way it affects him is in terms of his treatments. He has to have physio, nebulising treatments and medication.
“It has to be done before he leaves the house and takes about two hours out of the day.”
The little lad experiences build-ups of sticky mucus in the lungs and the condition also causes mucus in the pancreas, making digesting food extremely difficult. Indeed, the family has to work out how much fat he can eat at every meal.
In a bid to help those with the condition receive a new treatment, Seth’s family also took part in a peaceful protest in London to try and get an American drug called Orkambi on the NHS and put pressure on the government and pharmaceutical companies.
The drug is only made by a US company, and can prolong the life of someone with Cystic Fibrosis.
She said: “I hope Seth can get closer to 60, but in reality doctors say the average life expectancy for someone with the condition is 42.
“If Seth can have the drug at three, his life expectancy will be greater than if he receives it at 10 or 12.
“Hence, there will be plenty of tea and cake to tempt you to our open day!”
Seth is now looking forward to attending preschool at Pulford Lower School, while he also takes gym and swimming lessons.
Linda said: “He’s a lovely boy and it’s incredible what he does.
“Come along to a fun, family afternoon on July 7 and at the same time help to raise money for a good cause.
“I love my garden as does Amy and we want to share our enjoyment - and please come and eat some cake otherwise my husband Keith will be eating it until August!
“I live at Birdsong and Amy lives in Rothschild Road - Seth will be there, too.”
Seth lives with his mother Amy, 34, father Damian, 49, and brothers Freddie, 16, and Sidney, six.
Find out more about Cystic Fibrosis: www.cysticfibrosis.org.uk