Polmont school staff and pupils support five-year-old fighting life-limiting condition

Children and staff at St Margaret’s Primary School in Polmont dressed in their brightest clothes today to shine a light on Duchenne Muscular Dystrophy (DMD) and the difficulties facing five-year-old Jack Robinson.

He was diagnosed with DMD in 2019 following several trips to the doctor to try to find out why he was unable to walk until after his second birthday.

St Margaret’s Primary has already raised almost £1000 for Muscular Dystrophy UK through its Go Bright campaign.

Ashley Johnston, acting depute headteacher, said: “The aim of Friday’s event is to raise as much money as we can for MDUK, and also to raise awareness of Jack and his family in our wider school community.”

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Explaining how she and husband Joe learned of their son’s condition, mum Nuala said: “Jack was a toddler who didn't always meet the milestones expected.

“He was delayed in being able to sit independently, and was unable to walk until after his second birthday.

“We have had many trips the doctors and hospitals to try and find out what was holding Jack back.

"Joe and I had discussed it many times over the years, and both agreed that it didn’t matter how long it took for Jack to be able to walk, because once he achieved it, that would be him, for the rest of his life.

"Unfortunately, we were wrong, In November 2019 we got a diagnosis of Duchenne Muscular Dystrophy, which is a progressive muscle-wasting condition.

“For the most part, Jack is a happy, fun-loving, cheeky and mischievous young lad.

"He tires easily due to fatigue. He tries to keep up with his brother and peers, which can be difficult for him, and can make him lash out.

“Jack cannot run or jump and walks at a much slower pace than his peers. We as a family have adapted to his needs and capabilities, but life in general cannot adapt to Jack, so we will do all we can to help him through the stages of his life.”

Doctors told the family Jack would be in a wheelchair by the time he reached high school.

Mrs Robinson added: “He is currently taking daily steroids, which can affect his behaviour and emotions.

"We try our best to do as much as a family as possible, so that Jack can experience as much of the outside world whist he is still without a wheelchair and mainly independent.

“He quite often uses his bike, which we have adapted, so he can use it more freely, especially to school, so that he preserves some of his energy to help him with the day ahead.

Dad Joe is full of praise for the way in which St Margaret’s Primary has helped Jack.

He said: “Everything the school has done has been absolutely fantastic.

“They’ve got behind him 100 per cent, getting equipment for him and one-to-one teaching.”

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