Elizabeth’s Story

Elizabeth’s Story

January 2022 I was diagnosed with LGMD when I was 12 years old.  I had difficulty all my life with running, going upstairs, and doing sports, but no matter how hard things were I always pushed myself. I started working at 12 years old, started babysitting. At 16 years...
Margo’s Story

Margo’s Story

January 2022 This is Margot. She is almost two years old from Kentucky. She loves to swing, paint, and keep up with her 4-year-old brother. When she was born, there were no concerns. We went home and adjusted to our new life with baby number two. 8 days later, we...
Haley’s Story

Haley’s Story

November 2021 My name is Haley Hayes. I am from Virginia. I am 16 years old and was diagnosed with infantile-onset Pompe Disease at 6 months old.  I will be sharing my experience being a teenager living with Pompe and how it has affected me over the years. In the...