A caring Wearside youngster ‘desperate to find a cure’ for the terminal condition which has struck his much-loved dad is banding together with pals for a charity challenge this Sunday.
Ben Sweeney will be putting his best foot forward in a six mile sponsored walk for the Motor Neurone Disease Association (MNDA).
It took me a good year to get my head around it and even be able to talk about it.Catherine Sweeney
But the big-hearted ten-year-old won’t be walking alone in the Walk to D’Feet MND challenge - he will be joined every step of the way by fellow members of the People’s Mission Church Junior Band.
Ben, a pupil at Hetton Lyons Primary School, will be taking part in honour of dad John, who was diagnosed with the muscle-wasting condition two years ago.
Over a dozen junior band members, along with parents and senior band members, who will stopping off at the half way point of the trek at Newburn Country Park, to play tunes, before completing the six mile walk.
Mum Catherine Sweeney, 39, who lives with John, 48 and Ben and his older brother Adam, 13, in Fletcher Crescent, New Herrington, says Ben is determined to boost awareness of a disease for which there is still no cure.
Mrs Sweeney, who plays in the church’s senior band, said: “Ben did the walk last year and wanted to do it again last year.
“He joined the band in February and everyone has been really supportive. When his friends in the band heard about the walk, they wanted to take part.
“He has already raised over £300. He is a little boy desperate to find a cure.
“The last 12 months has been the best ever for awareness for the condition with the Ice Bucket Challenge held last year.”
Mrs Sweeney is now full-time carer for John, 48, who requires a walking stick and must use a wheelchair for longer journeys.
Both worked at Queen Elizabeth Hospital, Catherine as a staff nurse and John as a health care assistant, before his ‘devastating diagnosis’.
Mrs Sweeney added; “It has been devastating for us all. The hardest thing for me was telling the children.
“It took me a good year to get my head around it and even be able to talk about it.
“John started falling and tripping over when we were on holiday four years ago. He had two years of extensive tests before he was diagnosed.
“We had so many ambitions and I had a job offer in Australia. But we have both had to give up work.
“It is a terminal condition and still is no cure. We are trying to make the most of every day now.
“We are going on our last big family holiday together to Disney World in October.”
Motor neurone disease (MND) is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord.
This means messages gradually stop reaching muscles, which leads to weakness and wasting.
The People’s Mission Church will also be hosting a charity concert for the MNDA at its base in Baring Street, South Shields at 7pm next Saturday.
To support Ben’s fundraising efforts, visit www.justgiving.com/Catherine-Sweeney5/
People can also txt “BENY80 £5” (or different amount) to 70070
For more information on MNDA, visit www.mndassociation.org.