IDF Walk for PI’s impact on 3-year-old Ben and his teammates

By Kim Everett

My son Ben, who is now 3 years old, was sick from very early on. Ben was admitted to the hospital with pneumonia at 4 weeks old. Regardless of all of the specialists and follow-up appointments that we encountered, we had no idea what path our family was on.

In February 2015, we took Ben to the ER because he was unresponsive. He was transferred very quickly to PICU at the Children’s Hospital – where we learned that he had sepsis and later learned that he also had two partially collapsed lungs. We were introduced to amazing specialists who were finally able to explain what his blood work meant and, for the first time, informed us that Ben had a primary immunodeficiency disease (PI), or a "mune fishy-ee" as Ben calls it.

Ben recovered amazingly well, but it felt like our whole world was turned upside down after his diagnosis. In my search for answers, I discovered IDF and gave them a call. A staff member took her time to completely calm me down, helped me understand how to manage living with a son who has PI, and informed me that I had the power to start advocating for Ben and others like him.

Later that year, I came across information about IDF Walk for PI and thought that this event would be a fun experience for Ben as he was beginning to understand PI more and more. Shortly after learning about the walk, I was at a doctor’s appointment for myself, and they asked how my kids were doing. I mentioned that I was thinking of signing Ben up for IDF Walk for PI, and my doctor and the entire office immediately offered to walk with us. After the office asked me to let them know where to get team shirts, I knew I was committed. I had no idea what I was doing, but I created our team, recruited friends and family to support Ben, organized shirt distribution, and began fundraising. I’m not sure how we did it, but we made it to the walk with a large and amazing support system for Ben.

Ben had been looking forward to the walk since he first saw the walk flyer. We explained the event to him, and he immediately started calling it a “Zebra Party.” On the morning of the walk, he couldn’t wait. When we got there he was shy at first, but he warmed up. Ben spoke with John Boyle, IDF Vice President of Development, who told him about how he has PI and gets medicine in his arm too. Ben had never met anyone else with PI before and was completely in awe and thrilled to make a new friend just like him. Ben ran through the walk route with his super hero cape getting lifts from his Team Ben teammates when he needed a break. We may have been one of the last teams back, but Ben got his high fives for crossing the finish line and was glowing with joy. He left the walk raving about how amazing it was, and even months later, he is still talking about it. Whenever Ben is having a tough day, he puts on his Team Ben shirt from the walk, has a pretend Zebra Party, and leads a parade with his stuffed animals and his younger sister.

Ben has been admitted to the hospital a few times this year and is currently getting weekly IVs at home. He has been struggling emotionally with his PI, but all he has been talking about these days are his friends with PI from the Zebra Party and how he has to be brave just like them. Our friends and family who walked with us are still talking about the impact that IDF Walk for PI had on them and how it allowed them to be able to see Ben in his element while supporting him. Team Ben members continuously reach out to Ben and now understand much more about what living with PI means for Ben than they did before the walk.

Having PI as a 3-year-old must be extremely difficult. Ben knows that he gets more IVs and medicine than anyone else and that he is a very brave kid, but there are many questions that are left unanswered for him. Before the walk, I don't think Ben had one single positive experience with PI. He got some new toys in the hospital, but it was always in exchange for getting IVs or something negative. IDF Walk for PI was solely a positive experience that celebrated Ben and the entire PI community for being strong and brave. The day was inspiring for him, and also for us as we watched him be in awe of everything around him as he discovered that he is not alone. I could not have imagined that participating in IDF Walk for PI would change Ben’s worldview at just 3 years old.

Thank you, IDF, for having an amazing organization and for supporting those affected by PI in a way that no one else does. Thank you for giving Ben this positive experience.

Our sincere appreciation to Kim Everett, for sharing this incredible story. IDF is honored to be a part of Ben’s journey, and we are looking forward to seeing Team Ben again this year!