Mum of twins with debilitating muscle disease says she is '˜watching her boys die every day'
A mum who says she is watching her boys die every day as they fight a muscle wasting disease has thanked fundraisers as they bid to gather enough funds to send her on holiday with her sons.
Twelve-year-old twins Charlie and Corey Merrington have been diagnosed with Duchenne muscular dystrophy and have been given a life expectancy of just 25 years.
Mum of four Marie Merrington from Peterlee Close, Peterlee, is the twins full time carer after the boys were diagnosed with the disease aged four. She said: “I am literally watching my boys die every day. It is an awful disease that has no cure.
“They were born nine weeks premature and weren’t developing as quick as they should have been, as they didn’t walk until they were two.
“I thought it was down to them being premature, but then I realised there was definitely something wrong, so I phoned the health sister and she got in touch the physio at the University Hospital of Hartlepool where they ran some tests.
“They ran further tests at the Centre for Life in Newcastle and when the results came back they were able to confirm that they had a strain of muscular dystrophy.”
Marie later found out that she was a carrier of the chromosome which causes the disease and regularly has to take the brothers to hospital in Newcastle and Hartlepool for treatment.
Friend Danielle Horton, 33, set up a campaign to raise funds to pay for a family holiday to Disneyland in Florida, which will give the family some lasting memories.
The mum from Dene Avenue, Easington Colliery, said: “I felt like I needed to do something to try and help them because they are just getting weaker and weaker day by day.
“I have started a Just Giving page and am organising a fun day on August 26 at Peterlee Leisure Centre from 10am onwards to raise £5,000 to send them on holiday.”
Marie said of the fundraising effort: “It is amazing what everybody has been doing and it is so kind that Danielle has started this campaign to help the boys.”
The progressive condition which worsens over time, usually affects boys in early childhood and men with the condition will usually only live into their 20s or 30s.
In the UK around 100 boys are born with Duchenne muscular dystrophy each year, and there are about 2,500 boys living with the condition in the UK at any one time.
There is no cure for the condition which gradually cause the muscles to weaken, leading to an increasing level of disability.
To donate visit: https://crowdfunding.justgiving.com:443/Duchenne?utm_id=63