Duchenne Patient Stories:George, Isaac & Archie

Duchenne Patient Stories:George, Isaac & Archie

“Join Our Boys is to help us with our muscles,” explains four-year-old Isaac.

“It’s a trust too,” pipes in his twin brother, George.

“To help us with our muscles,” Isaac elaborates. “We already said that,” admonishes George and at that, the room goes silent.

The boys stare at each other intensely—intimidating defeat. As the tension builds, so do their smiles. Seconds later they are both on the floor, hands clutching their bellies, roaring with laughter.

“What’s so funny in there?” calls Archie from the next room with the unmistakable tone of an older brother. And though it seems hardly possible, the boys’ laughter grows louder, drowning out Archie’s repeating question.

“Some days it’s like Picadilly Circus,” Padraik says of his life now, two years after finding out that all three of his children have Duchenne. “We’re trying to run a company and look after three terminally ill kids and meet their needs in the process. We live and breathe Duchenne.”

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“Paula and I are just grieving,” he confesses. “But the loss hasn’t happened yet. We’re grieving the future loss of the roles of our sons and their aspirations. I am cognizant of the fact that what we have now is amazing. They’re still able to walk. But in ten or fifteen years their arms might not be strong enough to cuddle me. We’re grieving before anything has actually happened. It’s mad.”

“My muscles have gotten a bit weaker,” admits Archie, while tossing a soccer ball in the air with both arms. “I noticed in 2012 that I couldn’t run as fast or as long as my friends. It wasn’t painful, just tiring.” Archie’s eyes look up and then focus on the bright colors of the ball as it lands in his hand. His voice goes soft. “Usually I don’t like talking to people about my muscle problem because I think it’s really embarrassing. Try to score a goal on me!”

After deflecting a few shots on net, Archie continues: “I hope they find a treatment—so I can run faster! If I could run faster, I’d still be a goalkeeper, but then I’d be able to run up for the corners … I think Join Our Boys is about finding a treatment for the muscle problem and finding a cure for everyone else. Some children might get too old and if they don’t find a treatment quickly, those children will become adults with weak muscles.”

Archie leaps through the air, though not fast enough to block the ball this time. He lets out a grunt and then freezes, noticing the fresh grass stain on his otherwise clean khakis. “Promise you won’t tell my mom?”

In anticipation of their family’s approaching needs, Paula and Padraik started a trust and began to rally community support for a challenge they knew would take the strength of many hands to carry. “The initial mission of Join Our Boys was to build a purpose-built house for the boys that is fully wheelchair accessible,” Padraik explains. His hands flatten out blueprints for the new house on the kitchen table. “The house will cost 1.1 million euros. So far we’ve raised over 150,000 and we’ve already purchased the land.”

The boys’ excitement grows as the van pulls up to the blue and green metal gate where, one day, their new driveway will begin. Archie is first out, ignoring the buckles securing his brothers in their car seats. But as soon as the twins’ feet touch gravel, they are catching up to their brother, whose legs are longer but less agile. Just like that the trio is off, weaving through the field’s tall grasses and wildflowers, tumbling, laughing and holding hands.

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“Ouch!” cries Isaac. “I think I’m allergic to this flower.”

“Don’t touch your eyes,” George advises, then, unaware, grabs an identical spiky stem to smell the tiny yellow flowers on top.

“Maybe it’s poisonous,” Isaac replies, but this time with a smile. The boys point out where their new house will be and rolling in the grass, between eruptions of laughter, expound on how large their new bedrooms will be.

Since starting Join Our Boys in 2013, the foundation has grown into something much more than fundraising for the house project. “[Join Our Boys] is about Duchenne, and becoming part of the international conversation,” Paula says. “This is about every child with Duchenne. We want to be able to look our children in the eyes and tell them we did everything we possibly could.”

“We’re fighters, and we want what’s right and best,” Padraik adds. “We only have one problem, it’s called Duchenne. There has to be a solution for this.”

Though he doesn’t like talking to his friends about his condition, Archie appreciates the support his friends give him by participating in events. “I like May Day when all the other kids wear orange,” he offers. Orange is the chosen color of Join Our Boys, and on the first of May, the entire town of Roscommon wears orange in solidarity with the foundation and the boys.

“Our community gives us the impetus to keep going, to get out of bed in the morning,” says Padraik. “It’s like the crest of a wave, they are really behind us. They are at our backs, supporting us and making the journey less traumatic by their sheer presence, by being there.”“We believe in hope,” Paula adds. “We believe in people, we believe in community—we believe in miracles.”

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“If we give up hope,” she continues, “what else will the boys have? That’s why we’ve got to stay strong, keep motivated, keep moving and keep fighting. You couldn’t find more ordinary people than us. We just happen to be in the most extraordinary of circumstances.”