THE mum of a Chester schoolboy who passed away “after years of determination and fight” has paid tribute to her “legend”.
Claire Edge said her son Dylan brought a smile to people’s faces wherever he went, despite having been born with a rare chromosomal disorder that doctors had warned was “incompatible with life”.
The youngster defied the medics’ prognosis and went on to have a string of adventures with his family, scaling the steps to a castle, flying in an aeroplane and helping drive a steam train.
Dylan died aged nine at Alder Hey Hospital in Liverpool on August 22 surrounded by his loving family.
Now they are planning to hold a special party after his funeral on Monday (September 9) in celebration of his life – and everyone who knew him is invited.
Claire, from Blacon, told The Standard: “He didn’t have a birthday or Christmas last year as he was in hospital so I wanted to have a party to celebrate his life and give him the send-off he deserves.
“He loved life and everywhere he went he brought a smile to people’s faces. They would tell me what a joy he was to be around.
“He made such an impact on so many people, I’m just so proud of him. He is a legend. The most beautiful boy ever. We miss him so much.”
Dylan – who attended Dee Point Primary and then Dee Banks School – was born with Pataus’ syndrome, a rare disorder that left him with three major heart conditions.
He also had epilepsy and suffered from a stroke when he was first born due to low blood sugars. At its worst, Dylan’s condition meant he would suffer 50 seizures a day.
Due to his complex medical needs he had to be tube-fed for most of his life but he did manage to eat ice-cream and even enjoy hot drinks.
“He was very partial to a cup of tea!” said mum Claire, who was Dylan’s full-time 24/7 carer.
She added: “On paper he seemed really, really poorly but if you met him you’d never imagine that he was. He loved going on climbing frames and bouncy castles and learned to ride a trike. He used to go horse-riding too.
“He never let anything stop him and did everything with a smile on his face.”
During a family holiday to Cornwall two years ago Dylan walked up to Tintagel Castle, went body-boarding, travelled on a speed boat and stood on Land’s End.
They also went on an aeroplane ride across North Wales and were recently treated to a steam train journey to Holyhead.
“He got to throw a piece of coal into the engine and see how it all worked – he was absolutely amazed by that,” said Claire.
“He had such a keen sense of adventure and he was obsessed with trains! Some days we’d just park in Chester and get the train to Frodsham, like we did recently when we picked some carrots from the shop, and then came back. That for him was such a massive adventure. It was little things like that he loved.”
Claire said that she and the family – which includes partner Neil and Dylan’s father Stuart and siblings Chloe, Alfie, Jessica, Madison and Lily – had been blown away by all the messages they had received.
People from across the world, who knew about Dylan because of his rare condition, have flooded social media with tributes.
Claire said: “I’d like to thank everybody who has sent messages and memories, they are all a joy to read. As hard as it is at the moment they bring me such calm knowing he made such a big impact in such a short life. He is amazing.”
* Claire has set up a GoFundMe page to raise money to help pay for the funeral, party and Dylan’s final resting place.
It has already raised more than £1,800 and any excess money will be split between Claire House Children’s Hospice, Ronald McDonald House and Alder Hey Children’s Charity.
To donate visit
Dylan’s funeral will take place at Holy Trinity Church in Blacon at 1.30pm on Monday, September 9. The party celebrating his life will take place afterwards at Chester Racecourse until 6pm.