13-year-old Maggie Baugh wanted to do something to let her two brothers, who both suffer from Glycogen Storage Disease, know that she cares. Using her talented voice, she put together a video of herself singing a song she wrote for her brothers which has caused a stir online in the rare disease community.
Global Genes was able to speak with Maggie about her song and her experience.
Global Genes: Even though you yourself don’t have GSD, how did your sibling’s disease affect you?
Maggie Baugh: Well, my brother’s disease does affect me. They can only exercise a set amount of time at once, so if we go ice skating, it is only an hour, not a full day. Anytime we go to parks or playgrounds, we are on very limited time.
The disease makes it tough to go out to eat, or go to friend’s houses to eat. My brothers have a strict diet, and a strict time schedule for eating. Then it seems like when that is all done, it is their bed time.
We cancel a lot of plans at the last minute, too. When one of my brothers are sick, or having a bad sugar day, we cancel fun plans. Most of my performance events are with only one of my parents. They take turns taking me to events, and staying home with the boys.
They also influence my song writing. People ask me what GSD is because they never heard of it. I decided to write a song to explain how their life is different and unique from other peoples.
GG: Have you ever done any kind of singing before? What did you hope releasing your song “Run by the Clock” would do for patients with GSD?
MB: I started singing about 2 years ago. I sing and perform a lot in South Florida! I hope that releasing my song “run by the clock” can help patients with GSD feel better about themselves. People my age, in middle school, usually are unsure about people accepting them. When I released the music video I had hoped that people would understand everything about GSD and they would feel like they aren’t alone.
GG: What advice do you have for other sister and brothers who are watching their siblings go through serious diseases like this?
MB: I would tell them that there will be some scary battles that will happen during a GSD family’s life, but if you just keep your head up and sing a happy song, you will and can get through it. (That is a lyric from Maggie’s Middle School song.)
GG: Are you planning on doing any more signing or videos?
MB: Yes I want country music not only to be a hobby but I want it to be my life. I want to become a world famous country singer. Tomorrow night actually I am releasing my new music video called “middle school.” That is my first story line music video and it is really cool.
You can learn more about GSD info at www.glycogenstoragedisease.com
Keep updated on Maggie on her website at www.MaggieBaugh.com
or like her on Facebook at https://www.facebook.com/LikeMaggie