Mum of tot with 'death sentence' muscle wasting condition makes every day count

01 May 2024 , 13:44

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Little Jack Trudel, five, was diagnosed with Duchenne’s Muscular Dystrophy at birth (Image: Carrie Trudel/SWNS)

The mum of a tot with a rare muscle wasting condition says his illness is like a "death sentence" but she makes every day count.

Little Jack Trudel, five, was diagnosed with Duchenne's Muscular Dystrophy (DMD) at birth - a muscle wasting condition that causes progressive muscle weakness. His mum, Carrie Trudel, 34, lost two of her brothers - Danny O'Neil, 20, and Connor O'Neil, 18 - to the life-limiting condition and carries the gene.

Jack was delayed in walking and standing and can't run or jump. He got his first wheelchair aged four and will become more reliant on it over time. He is autistic and non-verbal but Carrie makes the most of every moment with him and hopes to take Jack and his siblings Michael, 12, and Emma, 10, to Disneyland Orlando next year.

Carrie, a mum-of-three, from Burgess Hill, East Sussex, 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. I carry the DMD gene myself and had two brothers who passed away from it, so I knew I carried the gene.

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Little Jack, five, with mum Carrie and siblings Emma and Michael (Carrie Trudel/SWNS)

"It's up and downs, I put it to the back of my head because otherwise I can't keep going and I have to keep going because I have this little boy who needs me. I have a cry when I'm by myself there are times it does come into my mind like when he first got wheelchair, but if he's happy I'm doing it right."

Jack was first diagnosed with DMD at three weeks old following a requested blood test at birth due to doctor's being aware of the fact Carrie had the DMD gene mutation. Jack's symptoms progressed, being delayed in walking and standing and over time his ability to climb stairs and walk distances declined.

He undergoes daily steroid doses which aim to manage symptoms and delay progression of the condition, but sadly there is no cure. Jarrie 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.

Jack with his siblings Emma and Michael when they were younger (Carrie Trudel/SWNS)

"He's got autism and is non-verbal as well, but he does understand everything, he's very mischievous and cheeky." Carrie says Jack loves Toy Story and Jurassic Park and she says he "lights up" when his favourite films come on screen. Friend Niki Francis, 30, and her children will be funding themselves to join Jack and his family on the trip to Disney World - with the friends saying they co-parent and their children are like "brothers and sisters".

To help get Jack to Disney World, 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.

Josie Adnitt