Jasper Cook, from Birkenshaw, was just eight years old when he tragically passed away last January.
His parents, Kim, 39, and Ian, 41, are still trying to come to terms with their devastating loss and don’t want any other family to go through their nightmare.
Kim said: “We haven’t got any answers. We’re in 2022 – how can there not be a reason for your apparently healthy eight year old to not be here?
“I think that’s been almost worst. I know what grief is like and I know that people get angry and it’s almost like there’s nothing to be angry at.
The family is now hoping to fundraise in Jasper’s memory for a charity like Cardiac Risk in the Young.
They are particularly keen to support screening events and research.
“It’s a lasting memory for Jasper, just so he doesn’t get forgotten,” said Kim.
Ian added: “With the research element, they might find things out which could stop this from happening to someone else.”
Kim said: “If we can stop one person going through this, then that’s the point.
Through the darkness of their unimaginable loss, Kim’s pregnancy has been a beacon of hope.
She said: “It’s exciting and devastating in the same breath. We had our family, this wasn’t in our life plan.
“But Jasper going, Lily was not meant to be on her own and I can’t bring him back. This isn’t a replacement, but I think this is something to look forward to, it’s a light at the end of the tunnel.”
And through those dark days, Kim, Ian and their family have found solace in the immense support they have received in Birkenshaw.
“Everybody has rallied, everybody has been amazing. People say there’s no community anymore, that’s rubbish. I don’t believe that for a second, especially around here,” said Kim.