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Southwold boy with muscular dystrophy is first to be helped by new nurse service

09:08 02 May 2014

Alexis, with parents Katrina and Adrian, and sister Eva.

Alexis, with parents Katrina and Adrian, and sister Eva.

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A boy from Southwold will be one of the first to be helped by a new nurse funded by an author’s charity.

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Five-year-old Alexis Ruthven was six months old when he was diagnosed with Duchenne muscular dystrophy, a condition that causes muscle weakness.

About one in 3,500 boys have the condition, and it rarely affects girls.

Alexis, his parents Adrian and Katrina, and his two sisters Eva, two, and Beatrice, one, used to travel down to Great Ormond Hospital in London for an annual health review.

Mr Ruthven said: “We’d have to leave early and come back late.

“It would be a whole day and we’d sometimes stay down there.

“It was such an upheaval at the best of times.”

As Alexis gets older he would be going more than once a year.

But now, Alexis and his family only have to travel to Addenbrooke’s hospital as a specialist children’s neuromuscular nurse will be created by Roald Dahl’s Marvellous Children’s Charity.

The full-time post has been created and funded for its first two years by the charity.

Cambridge University Hospitals’ NHS Foundation Trust has in turn committed to fund the role for a further three years.

The nurse will provide specialist information, emotional support and care, so that families are not left to cope with their child’s condition alone.

The nurse will become the essential link between families and the hospital, and other services based in the region.

Mr Ruthven said: “The Roald Dahl nurse will be an excellent point of contact for us, especially because Alexis has recently started on a new course of treatment and he will need close clinical monitoring.

“Thanks to the charity for making our lives a lot easier and easing the worry and stress.

“Now there’s a nurse who can understand, it makes our lives a lot easier.”

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