McKenna’s Story

McKenna’s Story

January 2022 I am McKenna Wellner and I was diagnosed with Pompe disease at 19 years old and I am now 20.  I first noticed symptoms the beginning of 2019 and was diagnosed October 1, 2020. Towards the end of my senior year of high school, I noticed walking up the...
Genevieve’s Story

Genevieve’s Story

January 2022 My name is Geneviève, and I am 42 years old. I was diagnosed with Pompe disease at the age of 40. Here is my story. In my early thirties, I was skiing a lot with my 9-year-old daughter at that time. It was during this activity that my daughter pointed out...
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...