The mum of a "cheeky and mischievous" child with a rare muscle wasting condition described as a “death sentence” says she wants to make every day count for her son.
Five-year-old Jack Trudel “always has a smile on his face” despite being diagnosed with Duchenne Muscular Dystrophy at three weeks old.
His mother Carrie, 34, says she wants to celebrate every small milestone and goal in her son’s life after she lost two of her brothers to the condition.
Carrie, from Burgess Hill, said: “I just make every day count and celebrate small milestones and small goals he manages to do.
"To have a brand-new baby and then get told this thing which comes across as a death sentence because he doesn't get to make it to adulthood - it's devastating.
“He's always got smile on his face no matter how tired or frustrated he is. He just gets on with it and is always happy and smiling at everyone he meets.”
Jack was diagnosed with DMD following his birth in 2019. The condition means his muscles progressively weaken and he was delayed in walking and standing.
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He was diagnosed after doctors requested blood tests because Carrie has the DMD gene. Her brothers Danny and Connor O’Neill died at the ages of 20 and 18 due to the condition.
Jack, who is also autistic and non-verbal, takes daily steroids to help manage symptoms.
Carrie said he loves Toy Story and Jurassic Park and “lights up” when his favourite films come on.
The family are now raising money to take Jack, brother Michael, 12, and sister Emma, ten, to Disneyland Orlando.
Carrie is fundraising on JustGiving to cover the costs of a wheelchair-accessible villa and car, flights and a carer for Jack for the trip.
She said: “As he gets older, he’ll be using the wheelchair more until he’s completely wheelchair bound which is why we’re trying to go to Orlando now so he can enjoy it while he’s still active and mobile.
“We’re trying to make as many memories for him and family as possible, especially his brother and sister who will be left behind and need lots of good memories.”
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