Thousands of pounds has been raised for a charity in memory of a baby who died aged just six weeks after being born with a rare and incurable disease.
Dylan Bonner was delivered seven weeks early by caesarian section on July 24, after it was discovered during a 20-week scan that he had developed complications including fluid on his stomach.
The disease affected his brain, nervous system, liver and spleen.
But thanks to a Ronald McDonald House - which provides free accommodation to families while their child is in hospital - his parents Jennifer Douce and partner Cameron Bonner, from Halesworth, were able to stay five minutes away from the London hospital where he was being treated and could be with him every day of his short life.
And now, Dylan’s grandfather Evan Douce has raised over £4,000 and counting by cutting off his long hair to help other families be near their sick children in one of the homes, which rely entirely on donations.
Dylan was transferred to King’s College Hospital in London four days after being born at the Norfolk and Norwich University Hospital.
Ms Douce said: “We were just exhausted, we got to London by ambulance and they took Dylan into the special care unit and we just didn’t know how long we would be there. I thought they would pinpoint what was wrong with Dylan, do some tests and they would be able to do something for him.”
Dylan was tested for a number of treatable diseases, but every time the results came back negative.
But throughout his time at the hospital, the couple stayed at House Camberwell in South London, run by the Ronald McDonald charity.
“They were just so kind,” said Ms Douce, also mother to six-year-old Ivy.
“We had nothing with us, we didn’t have a car. We wouldn’t have been able to stay in London without Ronald McDonald House Camberwell. They really looked after me and Cameron.
“When we turned up they had kitchen facilities, a clean bathroom, they even had donations of food for families that couldn’t afford it.
“We also met other parents going through awful times, but when you’re absolutely exhausted mentally and physically from worrying about your child, just having a bed was a luxury.”
Dylan’s condition continued to deteriorate, but the couple were able to stay by their son at all times.
“His problems escalated and I started to tell by their faces how serious it was,” said Ms Douce. “I kept asking if I was going to lose him and they said to just keep taking each day as it came.”
Eventually, Dylan was diagnosed with Niemann-Pick type C, a fatal and incurable disease with only around 1,000 sufferers worldwide.
“It was our worst fear,” said Ms Douce. “There was nothing they could do.”
Three days after his diagnosis, Dylan was transferred back to the Norfolk and Norwich Hospital to be closer to his extended family as doctors warned he had only a matter of days to live. He died the next day.
“I just didn’t want to lose him in London,” said Ms Douce. “We didn’t really get to hold him that much, and when he was first born we were rushed down to London.
“We were so far away from our family, and nobody had really got to see him.
“We got back to Norwich on the Monday, everyone came up to see him and he died on the Tuesday.
“But I don’t know what we would have done without the Ronald McDonald House. The staff were lovely, the accommodation meant me and Cameron could stay together and at one point my mum and dad came down to stay.
“Even though it was a horrific time, without the house, we would have been sleeping in a hospital corridor for six weeks.”
Ms Douce’s father Evan Douce decided to raise money for the charity and shaved his hair off in a special event in The Rumburgh Buck in Halesworth, which raised over £2,000 on his Just Giving page.
A further £2,000 was raised on the night in donations and selling tickets for a raffle, with prizes donated by local businesses.
Mr Douce said: “They did everything they could, and I don’t think people realise what McDonald’s does.
“The hospitality and care the house displayed to my family during their stay was truly amazing.
“We wanted to give something back to those that helped us, but we never dreamed we would raise as much as this.”
To support the family in their fundraising, visit www.justgiving.com/evan-douce/
•Are you raising money for charity? Email polly.grice@archant.co.uk
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