Pompe Day is wrapping up soon for another year. It’s important to point out that for Pompe families, Pompe Day is 365 days long.
This year, for International Pompe Day, we’re launching Portraits of Pompe, an ongoing curation of stories and photos from Pompe patients and families.
“We all have our challenges in life and we will all have bad days but it’s how we face those challenges that make us who we are. As I like to say, any day above ground is a good day indeed.”
“I love and cherish my two children Katelyn and Carter above all others.”
“We hope for a cure.”
“I always thought I was weak and lazy…”
“Noah aspires to be successful but, for now, he’s considering himself to be a professional gamer. (After school) of course.”
God saw you getting tired, and a cure was not to be. So he wrapped his arms around you, and whispered “come to me”
“Everyone we meet has something that they are dealing with in this world. Pompe disease is mine and I will make the most of it and hopefully the clinical trial I am on will make it better for those who come after me!”
“We want our child to be able to live the life she wants.”