Meet Seamus

13-year-old Seamus is a 7th grader currently living with his family in Coatesville, Pennsylvania. He has led quite an exciting life! Seamus and his family have lived and vacationed all over the African continent. (His dad is a tropical agriculture expert.) He has seen exotic wildlife up close, visited breath-taking locations and experienced many adventures that most kids his age only dream about.

Seamus loves to read, play video games and do computer coding. He hopes one day to channel these interests into creating video games. He is interested in all that goes into gaming—the graphics, characters, music, plots and intricate computer coding that creates the excitement.

When Seamus was about 8 years old, he and his family noticed he was having trouble walking—he also experienced extreme fatigue and pain, which prevented him from bike riding, swimming, hiking and running as energetically as his siblings, and from focusing in school. He didn’t know what was causing the problems. “I just knew that I hurt when I moved.”

Getting a diagnosis was not straightforward, but back in the US, after ruling out potential tropical illnesses and other diseases that could have caused his symptoms, he was ultimately diagnosed with LGMD2i. “I was confused at first and sad. I didn’t know anything about it.” Seamus’ mom, Annie was very scared in the beginning. “I was terrified he would just wake up one day and not be able to move.”

At school, in Johannesburg, sports were an especially important activity and not being able to join in was hard on him. He also found that teachers and classmates were often far from sympathetic. He described one classmate who was particularly cruel and a bully, and teachers who berated him about why he could walk in the early part of the day and had to use a mobility device later in the day. He liked drama and thought that participating in the school play would be something at which he could excel and enjoy, but he was cut unexpectedly from the cast. It was hard to have so few activities in which to participate and he was very discouraged.

The family moved to Pennsylvania in the summer of 2019. Just as Seamus was settling into school and life in the US, COVID-19 and the Stay-at-Home requirements became the new reality. So, now he is home with his 16-year-old brother and 17-year-old sister and his mom. His dad is considering a job in Zambia—so they may be moving back to Africa soon. The family worries about having access to good health care there but feel that they could come back to the US periodically when necessary.

When asked what advice Seamus might give to another youngster who was newly diagnosed with LGMD2i he said: “Know what your own power is—your capabilities and limitations. And, expect other people to be confused and not always understanding. Also, find things you like even though they may not be everything you want to do.” Annie adds: “Turn fear into problem solving and think about what changes you can make to adapt along the way. Try to not get too caught up in what you can’t do and keep everything in perspective.”