Assistance dog for brothers with life limiting genetic condition has life changing impact – Health News UK

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The mother of two boys who have a rare genetic muscle disorder has spoken about the life-changing impact that their assistance dog has made on their lives.

Anna Rogers, 40, and husband Owen, 45, received the shocking news that 13-year-old Ben and nine-year-old Sam have Duchenne Muscular Dystrophy, five years ago.

Duchenne Muscular Dystrophy (DMD) is a life-limiting genetic condition that leads to muscle wasting that gets worse over time.

Early signs may include delayed ability to sit, stand or walk and difficulties learning to speak and most children with DMD use a wheelchair by their early teens.

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Back row, left to right Ben, Lily and Sam with mum and dad Anna and Owen and assistance dog Sadie in front

However, Ben and Sam’s diagnosis came later than you’d normally expect when Ben was eight and Sam was five. 

The family from Bourne, Lincolnshire thought that something might be wrong during a holiday to Spain when Ben, eight at the time, was going up steps, one leg at a time.

His condition was eventually discovered by chance when he attended a doctor’s appointment for something else.

Charity Dogs for Good helped arrange an assistance dog for the boys to enable them to live more independently.

Four-year-old lab Sadie now helps as much as possible by fetching shoes, helping to pick things up from the floor, opening doors and helping them with daily tasks.

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Ben with Sadie.

Mum Anna said: “Owen was taking Ben to see the paediatrician for a routine check and I reminded him to ask the doctor about Ben’s tight calf muscles.

“He was referred to a physiotherapist and she asked him to get up from the floor without using his hands but he couldn’t. I could tell from her face that whatever it was, it wasn’t good.

“She remarked on his large calves and we told her that his brother has large calf muscles too and she seemed increasingly concerned and asked to looked at him as well.

“They both have what looks like beefy calf muscles and now I know this is a sign of Duchenne’s because it’s caused by fat and scar tissues building up in the legs.”

The couple waited for several months for the results of genetic tests and then they were told the devastating news that both their sons had Duchenne Muscular Dystrophy.

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Sam with Sadie.

Anna said: “It’s one of those things that came out of the blue, we had no knowledge of it in our family.

“It was a real shock to be told that they had this life limiting condition and eventually they won’t be able to move any of their muscles and that it could eventually affect their heart and lungs. I can’t really put into words how we felt.

“You go from being just a normal regular family with all the normal family problems to a whole world of doctors, healthcare plans, physio, drug trials and the boys having to wear splints at night.

“We’ve also had to make adaptations to the house so that we’re prepared for the future, but we try not to think too far ahead. You do get better at dealing with it, because you have to, but the past few years have been very tough.”

Treatment for DMD is in its infancy and there is currently no cure.

Early signs may include delayed ability to sit, stand or walk and difficulties learning to speak and most children with DMD use a wheelchair by their early teens.

Anna and Owen also have an 11-year-old daughter called Lily who does not have the condition.

The family heard about Dogs for Good when there was a story on BBC Children in Need about another boy with Duchenne who had an assistance dog from the charity.

They thought Ben would benefit from an assistance dog to help carry out daily tasks such as picking items up off the floor and give him independence as his condition progresses so they applied to Dogs for Good.

It took 15 months from their initial enquiry to being matched in February 2018 with their dog Sadie, a beautiful yellow Labrador x Golden Retriever.  Sadie had been specially trained and while she was introduced initially to help Ben she now helps Sam as well.

The lovable pooch also helps Ben and Sam when they attend hospital appointments and feel upset or anxious.

Anna added: “She’s really helped when they have blood tests and injections, keeping them calm by resting her head on their laps and looking up at them with her big brown eyes.”

“Sadie sleeps on the bed with the boys which gives them comfort because their bedrooms are downstairs and we’re upstairs. When they’re upset or sad Sadie’s very good at cheering them up. She rests her head on their lap and gives them lots of cuddles and face licks!

“She’s great fun and gets us out and about. We all absolutely love her and can’t imagine life without her – she’s such an important member of the family and the boys really do appreciate everything she does for them.”

Ben said: “Sadie means everything to me” and Sam said: “Sadie helps, she’s cute and I love her.”

 
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