Perspectives of The Pompe World

As I often find myself lost in worry about how and when I’ll explain Pompe Disease to my kids, it’s so refreshing to hear the perspective of an older sibling of a child with Pompe Disease. There is so much to consider such as age, maturity, and severity of disease and this often feels like we don’t quite know how to help shape their perspective. I don’t think there really is a right way, but I do know they can teach us just as much as we can teach them.

Jordan is the big sister of Isaac, who was diagnosed with Pompe disease in 2017. She was so generous to share her perspective:

“When my little brother, Isaac, was diagnosed with pompe disease in January of 2017, our lives were changed forever. Isaac had his first infusion on Rare Disease Day, 2017. And every other Tuesday after that, we spent 6 hours in the hospital. I love my brother so much. He is sweet, nice and brave. I get free fudgesicles at the hospital. I get free food at the hospital. Isaac is afraid to tell other kids that he has pompe disease. I don’t know if he understands how much of an impact he has on other people. He is an inspiration for many, many people. Because he gets treatment, he is able to live a normal life. Well, pretty normal. He is able to do everything they can do, and more. He is smart and strong and brave and sweet. Some other kids aren’t smart or strong or brave or sweet like he is.

My parents were very worried when he got diagnosed. All I knew was that there was a treatment, and that was good. We are grateful that we do not have to drive hours and hours just to get a treatment. We are some of the lucky few who have that opportunity. Isaac is a crazy boy with so much energy and sometimes it’s hard to deal with. Sometimes he is too energetic and breaks things. Sometimes I get mad at him and yell at him and he cries. Sometimes he is annoying, like every sibling. But it is hard to have a pompe warrior as a brother. Most of the time, he gets all the attention and sympathy from people and I am left to watch. My parents get attention sometimes, too. They talk about his diagnosis, treatment and everything with people they meet. I feel terrible when Isaac gets poked at his infusions. Especially when they have to do multiple pokes. He is so brave. My worst fear is of him getting hurt. It is hard.”

Her perspective really pulled at my heart because it’s so genuine. While they play a normal sibling role to each other, she also worries about him and feels protective of him. She rightfully struggles with the way the attention falls to his condition as any child in her shoes would, but her love for her brother takes spotlight.

I especially love her ability to simplify the situation and see the positives. She says “all I knew was that there was treatment and that was good” and notes the fudgecicles at the hospital. From a child’s perspective, they haven’t learned worry yet the way adults have. And their ability to find the positives is truly awe-inspiring.

I know as parents, we often wonder how this diagnosis is going to affect our other children. Hearing Jordan’s perspective has truly brought me comfort and inspiration. Thank you to her mother, Meg for allowing me to share her perspective. What an amazing young woman she is and I’m so glad Isaac has her in his corner.