Portraits of Pompe

In recognition of International Pompe Day, which is celebrated around the world on April 15, we’re introducing you to some of us, and how we became aware that we have Pompe disease.

Pompe disease is a rare, inherited, neuromuscular disorder. There are two versions of Pompe, called periods of onset; infantile and late-onset. Infantile is much more serious, but both versions cause proximal muscle weakness. That weakness affects balance, strength and even breathing. Although most families have a single member that is affected, Pompe disease is inherited so some families have more that one affected member.

John

John

“Set your goals high and work to achieve them; make the improbable possible!”

Ian

Ian

“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.”

Jim

Jim

“I love and cherish my two children Katelyn and Carter above all others.”

Deklyn

Deklyn

“We hope for a cure.”

Guy

Guy

“I always thought I was weak and lazy…”

Noah

Noah

“Noah aspires to be successful but, for now, he’s considering himself to be a professional gamer. (After school) of course.”

Chase

Chase

God saw you getting tired, and a cure was not to be. So he wrapped his arms around you, and whispered “come to me”

Shauna

Shauna

“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!”

Romy

Romy

“We want our child to be able to live the life she wants.”

Isaac

Isaac

“I want to be an architect”

Alexandra

Alexandra

“If you look for a silver lining, you’ll find something sweet—for me it was meeting all of the wonderful people I have connected with through the process of navigating life with Pompe.”

Lori

Lori

“Hey I’ve fallen and can’t get up. Throw me a pillow and some crumbs…”