From just six-months old, Ben Evison has suffered from a muscle-wasting condition that has stopped him from playing with other children. The schoolboy, now seven, has struggled to make friends as a result of the devastating illness. But his life has been turned around after being introduced to the perfect companion – a 12-week-old support dog called Rosie.
Ben from Whitchurch, Shropshire, was told he had spinal muscular atrophy with respiratory distress type 1, or SMARD1 in February this year and is believed to affect just eight people around the world.
The genetic mutation leaves Ben unable to eat, sleep or play like normal children as it affects his respiratory system.
But everyday tasks he finds difficult have been made easier by the chocolate Labrador, who has helped aid him in his treatment.
The animal is now being trained to help Ben get dressed, pick things up and will also be able to monitor his breathing.
And after meeting adorable, the pair have formed an inseparable relationship as she aids Ben with everyday tasks and has already had a life-changing impact.
His mother Catherine, 39, a part-time administrator, said: ‘Although Ben goes to mainstream school, he struggles to make friends with the kids there.
‘Now he has Rosie it means the world to him. Not only will she be trained to help him get dressed and monitor him, but she’ll also be his best friend.
‘The condition is extremely rare, and Ben has a different form that no-one else in the world is listed as having.
‘We just don’t know what the future holds for Ben. As parents it’s very scary but we take each day as it comes.
‘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 and Rosie will help with that.’
Ben first developed symptoms of the condition when he was just six months old, but it was first mistaken for club foot and then for Charcot-Marie-Tooth disease.
It was not until just a few weeks ago that Catherine and Paul finally got the correct diagnosis.
SMARD1 is caused by a genetic mutation. It attacks the respiratory system and children with the condition rarely live past two years old.
Catherine said: ‘When we thought it was CMT it was bearable because at least we knew what to expect and it is not life threatening.
‘The diagnosis of SMARD1 completely turned us upside down.
‘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 stubbornness to live.’
Ben is underweight because of his condition, and has a feeding tube and pump at night time.
He has splints on his legs and struggles with walking, but he now has little Rosie his life has been transformed.
Care support worker Paul, 47, said: ‘Me and Catherine get up in the night to check he is still breathing. He has a feeding tube and although he is still underweight the 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 okay.
‘Once trained, Rosie will be able to help monitor Ben’s breathing in the night, as well as helping him get changed and go out.’
Unfortunately, charities were unable to supply Ben with a support dog either because he is outside the catchment area or because Ben is too young.
But Catherine and Paul were determined to get a dog to help Ben.
Catherine said: ‘You can see the difference in him already.
‘Ben has a brother Luke, nine, and a sister Bethany, six, who also love having Rosie around.
‘They don’t treat Ben any differently. They help him, but to them he is just a brother. It’s really lovely.
‘Rosie will help Ben get some independence as he gets older.
‘The charities said they couldn’t give him a dog until he was 15, as that’s when he’d start going out on his own, but we don’t even know if he’ll still be here then so we wanted to act now.’
Rosie’s training is costing the family £31 an hour so they have started fundraising to cover the costs.
Paul 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.
‘Ben suggested we do some fundraising so we are going to do a car wash and he 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.’
A spokesman for specialist genetic research centre GeneticEx said: ‘SMARD1 appears to be a rare condition, but its prevalence is unknown.
‘There are just 60 cases reported in the history of scientific literature, with estimates as low as under ten sufferers currently living.
‘It is an inherited condition that causes muscle weakness and respiratory failure typically beginning in infancy.
‘Normally, the diaphragm contracts and moves downward during inhalation to allow the lungs to expand.
‘With diaphragm paralysis, affected individuals require life-long support with a machine to help them breathe (mechanical ventilation).
‘It is common that sufferers do not reach the later stages of childhood.’