“I have a greater perspective on life thanks to being Frankie’s Dad”

Paul’s son, Frankie, was born with muscular dystrophy and recently had his 16th birthday. In celebration of Father’s Day, Paul reflects on what fatherhood means to him, how this has evolved over the past 16 years, and what being a father to a child with a muscle wasting condition means to him.

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If I’m honest, I wasn’t someone who was certain they wanted children. My wife always knew she wanted to be a mum, and I went along with it. Then my youngest son was born, and everything we’d been told to expect didn’t happen. Frankie was born blue and struggling to breathe. Within minutes, he was taken to a high dependency unit in hospital. No chance for a quiet, bonding moment – just people rushing around, monitors, and fear.

Eventually, Frankie was diagnosed with congenital myotonic dystrophy. We’d never even heard of the condition, let alone knew what it meant. It took about seven months to reach that diagnosis, and even then, there was no clear guide to what Frankie’s life would look like. We also found out that my wife and father-in-law had the same condition, but less severe forms so they had never known. As two new first-time parents, we suddenly had this life-changing news to try and get our heads around.

The early years of parenthood

Frankie had a tough start. Feeding was a struggle as he’s never been able to purse his lips, so breast feeding wasn’t possible. This made those early bonding moments especially hard for my wife.

Frankie has also never been able to smile. This might sound like a small thing, but it’s one of the first ways parents connect with their kids. People out and about often coo over babies and say, ‘give us a smile little one’, which was always hard to hear – they had no idea we’d never get to see that. But Frankie had the most amazing laugh when he was little which filled a room, and we learnt to enjoy that instead. That laugh got us through a lot.

Learning to live a ‘normal’ life as a family

“We decided from the beginning that we weren’t going to treat him differently. Frankie has a younger brother who doesn’t have the condition, and we’ve always included them both in everything.”

Of course, there’s been adaptations, but we’ve never stopped Frankie from doing anything a ‘normal’ kid would do.

We’ve always been an outdoorsy family. Frankie and I have walked up some serious hills together, including the Old Man of Coniston, Catbells, and a few others. It isn’t always easy, but the sense of achievement when we make it up there makes it all worth it. His mobility has declined over time, particularly in one leg, but the main thing is that we find ways to adapt. Shorter walks. Backup plans. Public transport home afterwards. The point is we still go.

Frankie’s also a big fan of cycling, and thankfully, that’s something he can still do well. Living in York helps as it’s flat. We get out regularly, just the two of us or as a family, and that time on the bike gives him a bit of freedom that walking no longer does.

Making memories

One of the things I look forward to each week is our Thursday movie night. My wife takes our younger son kickboxing, and Frankie and I choose a film to watch together. It’s small things like this that are so simple, but they really matter.

Frankie’s also travelled more than most adults. He was on a plane at six weeks old, long before we had a diagnosis. Since then, he’s been to Thailand half a dozen times, Bali, Singapore… you name it – his Facebook page looks like a travel influencer’s.

“We travel light, with backpacks, and move around every few days to gain new experiences. See different cultures. He loves it.”

And we’ve always found that people abroad are helpful and kind. We just plan ahead, adapt, and make memories.

What I’ve learnt as a father

Having a child with a condition has given me perspective and a feeling of wanting to give back. I’ve done challenges like Pedal Paddle Peak and climbed Kilimanjaro to raise awareness and money for Muscular Dystrophy UK. It’s a reminder that while I might moan about having sore knees, I’ve got nothing to complain about compared to what others go through.

“If there’s one thing I’d say to other dads dealing with a newly diagnosed child, it’s don’t assume the worst.”

We read a lot of scary stuff online when we found out about Frankie’s condition, and lots of it hasn’t applied to us.

Every child is different. Every family is different.

Focus on what your child can do. That’s what matters. And try not to think too much about the future; ground yourself in the present and giving your child the best life possible. I guess that’s why we travel so much; we never know what’s around the corner for anyone, but especially Frankie, so we build amazing memories together as a family and ensure his life is full of experiences.