by Ashley Hall

Published: LifeLines for Health, vol. 21 (2024)

We first learned that our son Maverick had developed inhibitors after spending the first few months of his life in the hospital. We were devastated by the news and after hearing that word, we were in total shock! How could this happen? Why us? But most importantly why him? It was such a scary and frightening time in our lives, and we were so lost! We thought we were already pros at dealing with the hemophilia part since it ran in my family and my middle son had already been diagnosed as having severe hemophilia A. 

That’s when I set out on a mission to start learning anything and everything I could about what life with an inhibitor was about to start looking like for us. We were in uncharted territory as no two cases I had found were the same. All I knew is that it had never ran in my family previously, so we were clueless when it came to the inhibitor aspect. I started to read stories where some kids beat them, while some never could. We hardly knew any families with young kids, and I just remember feeling so scared and confused with so many questions still left unanswered.

That’s when someone messaged me one day telling me about CHES Foundation, Inc and invited us to attend their camp, After the Shock, so that we could meet families just like ours going through some of the exact same things! That someone also just so happened to take me under her wing and helped teach me everything she knew about inhibitors and treated us like family from the start! I will forever be grateful for Mrs. Janet! She is and forever will be my inhibitor mama!! 

We jumped at the opportunity and I’m so glad we did! CHES provided us with a safe space to vent about medical issues going on in our lives, yet we were also able to get much needed clarity and guidance by other families going through similar treatments. We bonded instantly with other families and my kids were able to meet other kids going through very similar situations! They were able to have a weekend of some type of normalcy where they could laugh and play and run free knowing we had the proper help on standby if anything were to occur. 

The After the Shock Inhibitor Family camp provided onsite nurses, industry representatives who were available to answer any questions they could about certain medications and most importantly we had HELP! We had a personal helper called a Pal who had inhibitors himself so we knew we could relax and be stress free knowing they knew how to help in case an injury occurred. It was a weekend of fun and fellowship and most importantly education.

My kids loved fishing, archery, and we all enjoyed the cooking class together. Although Maverick at some point seemed to be enjoying eating the food more than the actual cooking part!  Just seeing our kids run around with other kids like them made the journey up to Camp Zeke in Pennsylvania for the After the Shock camp well worth it! The educational classes were spot on and just what my husband and I needed to help us make more educated decisions in our future! This is a smaller community that is much needed to help give us the mental and physical support we desperately needed! Nobody should fight inhibitiors alone, and having an army of people who understand exactly what you’re going through makes you feel like you can conquer anything! Especially these pesky inhibitors!

We made friendships that turned into family and bonds that will last a lifetime. Whenever we attend a new program and learn something new that we didn’t know before, that is always a win in our book. We have been fighting Maverick’s inhibitor through every other day Immune Tolerance Induction Treatment for the past year and a half and currently still fighting. Although everyday seems like a challenge, we remain hopeful and can’t wait until we get the chance to reunite with our inhibitor families once again!