Family of Burgess Hill boy with serious genetic disorder raises funds for dream holiday to Walt Disney World and Universal Studios

Five-year-old Jack Trudel was diagnosed with Duchenne Muscular Dystrophy when he was born.

The condition causes progressive muscle degeneration and weakness because of alterations to a protein called dystrophin, which keeps muscle cells intact.

Mum Carrie-Anne Trudel, 34, of Maple Drive, said she was ‘devastated and heartbroken’ when Jack was diagnosed at birth.

She said: “It’s genetic and I carry it. I had two brothers that passed away 15 years ago from it.”

Carrie-Anne explained that her brothers, Danny and Connor O'Neill, were able to go to Disneyland as children thanks to the fundraising efforts of her mother and their school. Danny was 20 when he died and Connor was 19 when he passed away.

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Now Carrie-Anne’s family want help Jack in the same way and make the most of their time with him. She said: “The aim is to get Jack, who loves Toy Story and dinosaurs and all that kind of thing, over to Orlando to go to Disneyland and Universal.”

The JustGiving fundraiser at www.justgiving.com/crowdfunding/JacksRaw is being organised by Carrie-Anne, Jack’s father, his grandmother and their family friend Niki Francis.

“It’s a once in a lifetime thing that we probably wouldn’t be able to do otherwise,” Carrie-Anne said, adding that the trip will make important memories for Jack, his brother Michael, 12, and sister Emma, ten, who are also going. She said: “It will just be magical to see his face light up when he sees all the characters and the dinosaur bit at Universal.”

Niki said: “Jack is non-verbal and I think a lot of people don’t realise how much he takes in. Jack roars when he sees dinosaurs, his face comes alight and he's very energetic.” Niki added that she will also be going with her children, but Carrie-Anne said the fundraiser is strictly for Jack’s flight, Jack’s tickets and the villa. She said: “The collective will be paying for everything else.”

Carrie-Anne said their goal at the moment is £6,000 and is grateful to everyone who has donated already. The team will be collecting in Burgess Hill on May 25 and there will be a fundraising quiz night at The Woolpack on June 20.