Running the Great North Run for Son: “Other than living with Duchenne, he’s a normal happy little boy. He’s just trying to live his best life.”

Father of two, Dan Tailby, shines a light on his son’s journey of living with Duchenne muscular dystrophy after being diagnosed this year. Dan talks openly about his family’s experience on World Duchenne Awareness Day as he prepares to run the Great North Run.

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“Looking back there were signs. 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.

When he started nursery, it became apparent that he wasn’t as mobile as the other children.

From what we understood, it’s not terribly unusual if children aren’t hitting milestones, as they develop at different times. Professionals just told us that ‘he’d do it in his own time.’ We were concerned but never imagined it was something serious like muscular dystrophy.

When he started walking, he was unsteady. Any slight knock he’d fall over but couldn’t catch himself. We thought his balance could be an issue.

The start of the ENT journey

Reuben also struggled with his speech, had a runny nose and dribbled constantly. We thought it was all connected and we were referred to the Ears, Nose and Throat (ENT) department at our local hospital.

They thought his hearing might be a problem but could never get an accurate test result as he was too young. The tests went on for years and they could not confirm if Reuben had any hearing loss. Eventually he had Grommets fitted and his adenoids removed last November 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. He was now walking and able to run at a slow pace for short periods. He struggled with stairs and wasn’t jumping, so we still had some concerns about his general development.

We have a daughter, Maeve, who is one. During a health visitor appointment for her, we raised these concerns. Reubenhadn’t had a development check for a long time, due to us relocating. The health visitor referred us to paediatrics and we got our GP to do the same.

His speech was still a bit slurred, but he wasn’t as dribbly. He could get frustrated, as he wasn’t able to get across what he wanted. We got good at reading him, where others found it hard as they didn’t understand him.

We finally saw a paediatrician, physiotherapist and occupational therapist (OT) for an assessment and blood tests.

Receiving that phone call on Christmas Eve

We received a call on Christmas Eve that the results came back showing a high CK level, confirming it was muscular dystrophy. It didn’t tell us which variant, but we knew it could be Duchenne.

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 confirmed that he had Duchenne in February this year. You hope somehow it wasn’t or they got it wrong. But it wasn’t to be.

NorthStar Programme at Oxford

Reuben was referred to the John Radcliffe Hospital for an initial appointment in May. We’ve been several times since to see the specialist there and he’s part of the NorthStar Programme.

Oxford is an hour and a half away so we try and do as many appointments locally as we can with nearby services.

My wife Nicole takes Reuben to most of his appointments, sometimes there are two or three a week. She’s been on maternity leave and was due to return to work, but she’s made a hard decision to leave as they couldn’t offer flexibility or part-time hours. Instead, she’ll do freelance work that fits around his needs.

Starting Primary School

Reuben’s nursery has been brilliant following his diagnosis and helped us secure his EHCP (Education, Health and Care Plan) before starting Primary School this September.

Understandably, we’re nervous about him starting. He’s a creature of habit. If his routine or environment is unfamiliar, he can get dysregulated. We’ve learned to manage this by anticipating change and making him aware of what’s happening next.

The school’s a new environment for him but we’re confident the one we’ve chosen is the best in terms of supporting him. Going to a mainstream school gives him more of a chance to have a normal childhood.

Whilst we haven’t got a diagnosis, we suspect that Reuben may be autistic. Duchenne is linked to higher rates of neurodiversity. As parents, we know how Reuben is and a label wouldn’t change anything for us.

However, within a school environment a diagnosis would ensure he gets the support he needs. We appreciate there’s a long-wait time, so hopefully, he’ll benefit from it further down the line.

Running the Great North Run

I’ve never been a natural runner, but I wanted to improve my fitness after Maeve was born.

After the initial hurdle of getting out of the door and you’ve settled into a rhythm, it’s 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 and work.

I completed our local half marathon and spotted a social media advert for the Great North Run. We were aware of Muscular Dystrophy UK, as we’d reached out following Reuben’s diagnosis and got support through their Peer Support Service, so it made sense to give something back.

I’ll be joined by my old-school friends, John and Jordan. We’ve been friends for over 20 years, so it’s great to have them by my side.

What’s next for Reuben

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 hasn’t been any yet.

We don’t know of anyone within the family with a muscular dystrophy, so we’ve been for genetic testing to try and trace the gene. We’re waiting on those results which could tell us more.

Other than Reuben living with Duchenne, he’s a normal happy little boy. He likes playing football and loves Paw Patrol and Toy Story. He’s just trying to live his best life.