Ben's puppy training fund nears £2,000
It has been a whirlwind couple of months for the family of a boy with a rare illness who have been fundraising to pay for the training of his mobility dog.
Nearly £2,000 has been raised for Ben Evison, eight, over the last three months to help him train a dog which will aid his mobility and try to prolong his life by giving him more independence.
Ben, of Whitchurch, is one of only eight children in the world to have a rare muscle-wasting illness called SMARD1.
But thanks to the fundraising by Radis Community Care in Shrewsbury, Ben now has a little helper in the form of Rosie, his chocolate labrador puppy.
Ben's family had already raised £1,082 and this latest donation of £1,921 will help to get Rosie fully trained.
Ben's father Paul, who is a care support worker with Radis Community Care, said: "We bought Rosie to help Ben and improve his quality of life. We are getting her trained so that she can do things like open doors for him, change his clothes and put him in recovery position.
"She will also monitor a pump with a feeding tube he has at night to make sure it is working and alert us if something goes wrong.
"The training costs £31 an hour and usually takes about 18 months costing a total of £3,000, but there is no telling how long it will take."
Ben has baffled consultants since he was 18 months old, after his parents realised something wasn't quite right.
Paul and his wife Katherine, of Oakfields Close, faced years of inconclusive tests before they were finally told their son had a very rare form of spinal muscular atrophy, which causes muscle weakness and respiratory failure. Ben has splints on his legs and struggles with walking.
Charities were unable to supply Ben with an assistance dog because he is outside the areas that they cover.
Rosie is now 20 weeks old and has started the training. .
"We are so thankful to all the people that have come together to raise this money," said Mr Evison.
SMARD1 is a very rare inherited condition and is caused by two genes.
Only eight people in the world have the first gene, but Ben is so far the only person who has the second gene.
Ben attends Tilstock Primary School with sister Bethany, six, and borther Luke, nine, and has support from teaching staff.
To donate to the training of Rosie visit www.justgiving.com/yimby/rosie andben
