The mother of a young boy who suffers from a rare genetic condition has been travelling with her son to meet other families affected by Tay Sachs disease.
Three-year-old Jayden Easdale was diagnosed as having the condition when he was only nine months old.
His parents Lynn and Brian Easdale were told he may not live beyond four-and-a-half years.
But, in a bid to raise awareness and ultimately hunt for a cure, the family have journeyed to meet other people whose lives have been affected by the condition.
Tay Sachs is a rare inherited disease which manifests itself when a child is three-to-six months old and the nerves stop working properly.
Mrs Easdale said: “Jayden can’t sit up, he can’t move, he’s registered blind, he has regular seizures, is fed through a button feed in his stomach and is prone to chest infections, so he needs 24-hour care.
“But he’s a happy little boy and nothing seems to phase him. As long as he keeps fighting, we’ll keep fighting to find a cure.”
In most cases the condition is fatal so the Easdales have turned to the tight-knit Tay Sachs community and built a family of support.
Mrs Easdale said: “Jayden has opened so many doors for us and we’ve made friends with families whose children have Tay Sachs.
“He has his own Facebook page called Jaydens Journey and not every three-year-old has their own Facebook page.
“Just last week, Jayden was on holiday to Newton Abbott to meet some of the parents who have lost their children to the condition.
“Some from the UK and a couple from Tenerife met us too – they both lost their little boys, so were getting lots of cuddles.
“It’s a close group, so if you’ve had a hard day, you chat and they help, we chat every day and this was the first time we met some of them.”
Many of the parents are brought together by the CATS foundation which supports families and campaigns for awareness and a cure.
Mrs Easdale, who is also mum to Kaitlin, 19, and Connor, 6, is grateful the family can spend time with Jayden, whom she calls their superhero.
She said: “During his hard days, he is still cheerful or if you’re not having a good day, then his smile will just brighten everything up.
“His brother and his sister dote on him.
“From his diagnosis to now, he has warmed the hearts of so many people.
“We call him our superhero and will never stop fighting for him.”
