THOMPSON FAMILY

This Spotlight appeared in our April 2024 newsletter.

Hi Heather! Please introduce yourself and describe your connection to the Foundation.

My name is Heather Thompson, and my youngest child, Jack (18), has type 3 vWD. We knew there was a problem with Jack’s blood when he was two days old, but initially the doctors thought he had hemophilia. At three weeks old he had a bloody nose that wouldn’t quit (thanks to the infant nasal aspirator that I was using for his congested little nose), which prompted an ER visit, factor treatment and additional testing when the hemophilia factor didn’t stop the bleeding. And that’s how Jack was diagnosed. The rest of our family was subsequently tested and we learned that my mom, my husband, our other kids (Meg, 22, and Will, 21) and I all have type 1. We had no previous knowledge of any bleeding disorders in our family, so Jack’s birth really changed our lives, in more ways than one! We’ve been fortunate enough to be part of the Foundation since the very beginning.

Where do you live? What are your favorite and least favorite parts about it?

We live in Downingtown, PA, about 45 minutes from Philadelphia in one direction and Lancaster’s Amish country in the other. The kids think it’s boring here, but my husband, Scott, and I have found it to be a great place to raise our family. We’re close to the city, beaches, mountains and countryside. We have every amenity, great schools… and multiple HTCs and children’s hospitals. I love that we get all of the seasons, and that we only live two hours from my parents. My least favorite thing? Probably that we’re not on the beach!

What do you do for work? For fun?

I’ve been a stay-at-home mom since we started our family and moved to Pennsylvania in 2000. My prior career wasn’t anything I loved or wanted to do for the long term. I majored in history in college and would love to be a Civil War historical re-enactor someday. But all I’ve ever wanted is to be is a mom, so I’ve had my dream job for the last 22+ years! I volunteer with an organization that breeds, raises and trains service dogs. I also love to cook… nothing makes me happier than serving a home-cooked meal to a table filled with people I love. Our family loves to adventure all over the world, including RV trips to Bryce Canyon and Yosemite, visiting the D-Day beaches of Normandy, hiking Kauai’s Kalalau Trail, visiting Northern Cascades National Park, exploring Pompeii, and our biennial trips to Hilton Head Island.

Favorite Foundation conference memories?

I’ve attended every single Foundation conference, including both virtual ones; Jack attended all but 2023; and my husband attended the very first one with us. I’ll never forget standing with my husband at that first conference in 2017 and watching the patients gather for a picture. To see Jack surrounded by 50 people just like him, and to be in a room with other parents and family members who know just what our son and family deals with was so incredibly moving! After all these years, attending the conference now feels like a family reunion. I love meeting new families who feel overwhelmed and terrified, and sharing our experiences to maybe provide some hope and strength. I love the big brainstorm session with doctors, families and patients. I love talking with my mom squad and knowing that we’re bonded for life as we raise this next generation of severe vWD kids.

As a parent of a child with severe VWD, what advice would you give to parents of a newly diagnosed child?

The first is from our HTC: he is just a normal kid who happens to have a bleeding disorder. They told us not to put him in a bubble and that he could do almost anything that other kids could do. We’ve learned how to make this bleeding disorder fit into our lives, not the other way around. The other is from my mom: remember that we have two other kids who are just as important as Jack, and who need us just as much as he does. So that’s our story! Jack’s arrival changed our family in so many ways, but I always try to focus on the good that has come out of his diagnosis. Yes – some days that is really, really hard to do. I hate that my baby has to live with this, that there any limitations on his dreams, that he needs to stick himself with an IV three times a week. But I love the empathy that he has, the brave warrior that he is, the resiliency and strength he shows in everything he does. Early on we realized that there were two ways of moving forward after receiving the news of such a serious and chronic diagnosis. We can be better, or we can become bitter. There was no question which path we would choose for our family or our son, and we’ve worked really hard to make sure this lifelong challenge makes our entire family better, together, and individually. VWD doesn’t define who our son is, or how our family operates. It’s just part of what makes our family the way that it is, and Jack the great kid that he is.