For Seamus McVey, his typical weekend mornings consist of early wake-ups, chocolate chip pancakes and lots of bacon. Seamus’s three sons, Connor (8), Kian (6) and Finnegan (4) all have Duchenne muscular dystrophy. Seamus, however, does not let the diagnosis prevent his children from enjoying Saturday afternoon trips to run and play in the park or splash around at the pool.
Upon the diagnosis of his first son, Connor, Seamus diligently researched Duchenne to understand its progression and familiarize himself with available trials and treatments. The year after Connor’s initial diagnosis, Seamus and his family traveled to a conference in Chicago where he found numerous families willing to help in any capacity. Other parents offered to look after Connor while Seamus attended sessions and talks with professionals.
Seamus soon turned to Facebook to connect with other parents of children with Duchenne, and he was able to find a vast support system to share the ups and downs with. “The community in itself is one giant family. When one grieves, we all grief and we all feel the impact of every little hit,” Seamus said.
In the years following each diagnosis, Seamus has found the sense of community to be the most inspirational and uplifting. The network of parents keep others in the loop about trials and treatments at hospitals. Seamus has found parents across the country to lean on for support and share the triumphs of his sons.
Like most dads who have children living with Duchenne, Seamus finds it hard to watch his sons struggle to keep up with friends at the various stages of progression and finding government aid to help with the costs of medical equipment. However, there is nothing more rewarding to Seamus than seeing his sons smile over the big, and the small, things. For the past three years, McVey boys have served as honorary captains for the University of Wisconsin-Platteville football team and stand on the field for the coin flip. This has been an exciting moment for Connor, Kian, Finnegan and Dad.
Seamus is extremely active in his local soccer community and has used this arena to spread awareness and knowledge about Duchenne. Whenever he wears Jett Foundation or Duchenne t-shirts around, people stop and ask what is it, and Seamus takes this time to shed light on Duchenne and his sons.
When asked what advice he has for families who just received the Duchenne diagnosis, Seamus answered, “You are not alone in this journey. There is always someone to talk to, near and far.”
This Father’s Day, we would like to take the time to highlight the efforts of dads like Seamus for all they do for their children and for the community impacted by Duchenne.