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A couple who were told their baby could die within hours of being born are preparing to celebrate their second Christmas with him.
Heidi and Ryan, from Sittingbourne, have shared their story as part of this Demelza's festive appeal.
“We found out at my 20-week scan,” Heidi explained. “I remember them saying, ‘Oh, we're just trying to find out what's wrong’.
“I remember just looking at Ryan and thinking, ‘What do they mean? What's wrong?’
“At that point, it felt like everything just crashed down on you. It felt like a nightmare.”
Last year, when Heidi was pregnant with her son Jude, she was told he could die within days, if not hours, of his birth.
When he was born at Medway Maritime Hospital, he was taken straight into intensive care.
The couple was contacted by Demelza staff who advised them on end-of-life support.
However, Jude surprised everyone and kept improving, so the conversations changed to how the charity could help the family in the longer term.
The tot recently celebrated his first birthday and is doing "incredibly well".
Heidi said: “We are so excited as we approach our second Christmas with Jude as last year he was so poorly we couldn’t do any of the things we had planned.
“This year we’ll be making the most of every single moment and these things feel more significant because we didn’t think Jude would see his first Christmas, let alone his second.
“Jude does have an incredibly complex medical condition and we don’t know what the future holds, but right now he’s learning and developing at his own pace.
“Demelza is a great support and as Jude gets older, we know Demelza will always be here for us, whatever happens.”
Ryan added: “This year is going to be much better.
“We're going to get involved with a lot more of the activities at Demelza. I think Jude will really like that.
“He's a lot more aware now. This Christmas we want it to be extraordinary.”
The festive period is a magical time for all children but for those living with serious or life-limiting conditions, the memories they make with their families this year will be extra special.
Demelza is hosting several events for the children and families it supports – each one incorporating sensory activities, art and music.
This includes the opportunity to visit Santa at a fully accessible grotto and craft cafes where parents and carers can come together to get creative.
The charity aims to raise £70,000 through the appeal. To find out more, click here.
In Sittingbourne, there is a sold-out Festive Elf Trail and Market taking place this weekend.
Tickets for Demelza’s annual Celebration of Christmas at Canterbury Cathedral are also on sale. Click here to book.
The charity supports more than 2,500 children and relies almost entirely on the generosity of its supporters to provide funding for clinical care and bespoke emotional support and therapies.
Chief executive Lavinia Jarrett added: “Not knowing how much time a family has together can make planning for next year, or even just tomorrow, incredibly emotional and overwhelming.
“That’s why we want to make this Christmas extraordinary for the families we support.
“Every donation, no matter how small, has a big impact on the lives of the children and families we support and will help make this Christmas magical for families who don’t know what next Christmas will hold.
“Please donate to help create memories today that will last a lifetime.”