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.
Elizabeth
“I always keep trying, push myself, have a strong faith and never give up.”
Trevor
“If I could travel around the world I would do it in my Oilers truck.”
Lynn
“To my family and friends……. thank you for being there for me. And I am grateful for you!”
Allyson
“I would really love to be able to ride my horse again!”
Liam
“My parents think they can slow me down but no one can!”
John
“Set your goals high and work to achieve them; make the improbable possible!”
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
“I love and cherish my two children Katelyn and Carter above all others.”
Deklyn
“We hope for a cure.”
Guy
“I always thought I was weak and lazy…”
Noah
“Noah aspires to be successful but, for now, he’s considering himself to be a professional gamer. (After school) of course.”
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
“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
“We want our child to be able to live the life she wants.”
Isaac
“I want to be an architect”
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
“Hey I’ve fallen and can’t get up. Throw me a pillow and some crumbs…”