A Father of two and his childhood school friends will run the Great North Run to shine a light on his son’s journey of living with Duchenne muscular dystrophy after being diagnosed earlier this year.
Dan Tailby is supporting Muscular Dystrophy UK, the leading charity for more than 110,000 children and adults in the UK living with one of over 60 muscle wasting conditions, after his four-year-old son, Reuben, was diagnosed with Duchenne muscular dystrophy.
The 34-year-old, from Kettering, North Northamptonshire, joins over 60,000 people on Sunday 13 September, alongside friends of 23 years, John ten Bosch and Jordan Winn.
Dan, who’s married to Nicole and has a daughter, Maeve, aged one, said:
“Looking back, Reuben never really crawled as a baby. He didn’t like being on his tummy, so he’d just roll over. As our first child, we thought this was normal.”
The family were referred to the Ears, Nose and Throat (ENT) Department at their local Hospital. Dan continued:
“They could never get a good reading for Reuben’s hearing, as he was too young. This went on for years, and they couldn’t confirm if he had any hearing loss. Eventually he had grommets fitted and his adenoids removed to help with his glue ear, as they couldn’t operate earlier due to his age. We’d hoped for an improvement in his balance after the operation, but it didn’t really happen.”
Raising concerns with a health visitor, Reuben was referred to paediatrics, where he saw a paediatrician, physiotherapist and occupational therapist (OT) for an assessment and blood tests. These confirmed he had high CK levels and he required more tests.
Dan said:
“We received a call on Christmas Eve confirming it was muscular dystrophy. There’s never a good time to receive such news; we had to keep going for the children. We didn’t want to ruin Christmas, but felt it was essential our families knew. It was later confirmed that Reuben had Duchenne muscular dystrophy in February this year. You hope somehow it wasn’t, or they got it wrong. But it wasn’t to be.”
“Reuben has started steroid treatment recently. The dose started small and has increased week on week. He’s up to the full dose that he’ll have for as long as he needs it. We’re aware of the potential side effects, but thankfully there haven’t been any yet. He’s started school in September, and he’s just trying to live his best life.”
Ahead of running the famous Great North Run, Dan said:
“I initially spotted a social media advert for the Great North Run. We were aware of Muscular Dystrophy UK, as we’d reached out to the charity following Reuben’s diagnosis and got support through their Peer Support Service, so it made sense to give something back.
“After the initial hurdle of getting out of the door and you’ve settled into a rhythm, running is quite enjoyable. You either switch your mind off or you use the time to think. Time is precious, so I can fit a run in around the children. This run is for Reuben.”
This September is Muscular Dystrophy Awareness Month. Throughout the month, the charity is shining a spotlight on muscle wasting conditions to continue raising funds to support research and help those living with a condition and their families.
To read more about Dan’s story and donate, visit: musculardystrophyuk.org/Dan.
For more information about fundraising your way for Muscular Dystrophy UK, visit: musculardystrophyuk.org/fundraise-your-way.
For more information about Muscular Dystrophy UK, visit: musculardystrophyuk.org or call the free helpline on 0800 652 6352 (open Mon – Fri 10am – 5pm).
