Shropshire boy's new best friend to help battle against rare disease

Little Ben Evison, from Shropshire, is just like any other seven year old –  he wants to play with his new Labrador puppy and go to school with his friends.

Seven-year-old Ben Evison, from Whitchurch, is getting to know his new puppy Rosie. Ben is fighting a muscle-wasting disease.
Seven-year-old Ben Evison, from Whitchurch, is getting to know his new puppy Rosie. Ben is fighting a muscle-wasting disease.

But Ben is one of only eight children in the world to have a rare disease which is causing his muscles to waste away.

His parents were given the shocking diagnosis just two weeks ago.

Ben, from Whitchurch, has baffled consultants since he was 18 months old, after his parents realised something wasn't quite right.

They have faced years of inconclusive tests before they were finally told their son has a very rare form of spinal muscular atrophy – which causes muscle weakness and respiratory failure.

Ben's father, Paul,who is a care support worker, said: "We have finally been told that Ben has SMARDI, which is very rare.

"It is caused by two genes and only eight people in the world have the first gene, but Ben is so far the only person who has this second gene.

"By rights he should not be here, he shouldn't have survived past two years old.

"Doctors think the only reason he has done is because of his sheer stubborness to live."

Ben is underweight because of his condition, and has a feeding tube and pump at night time.

Mr Evison said: "Me and his mum Catherine get up in the nighttime to check he is still breathing. He has a feeding tube and although he is still underweight the feeding tube keeps him stable. We go into his room and his breathing is so quiet that we can't help but check that he is OK."

Ben has splints on his legs and struggles with walking. But he now has a little helper in the form of Rosie, his 12-week-old chocolate labrador puppy.

Charities were unable to supply Ben with a guide dog because he is outside the areas that they cover, but his parents were determined that he would not go without help.

Rosie will be trained to assist Ben in day-to-day tasks, but her training will cost £31 an hour.

Mr Evison said: "It's not that charities won't help us, they have said they will assist in any way they can. We had to buy Rosie and I asked my boss for more hours because of the cost of training her.

"He suggested we do some fundraising so we are going to do a car wash and Ben also wants to do a raffle.

"We would be so grateful for any money that we raise, Ben is so full of determination so we are just keeping positive for him and taking it one day at a time.

"Doctors have told us to carry on as normal and obviously that can be difficult, but Ben is so determined to live so we will carry on as best as we can."

Ben still attends school and has support from teaching staff, and he will also go on training days with Rosie so the pair can get to know each other.

SMARD1 is an inherited condition and is caused by a genetic mutation, children diagnosed with the condition rarely live past two years of age.

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