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.”