Elizabeth's Inhibitor Family

Iwant to start by saying we are so grateful to the Inhibitor Family Camp for giving us the opportunity to attend this unique wonderful camp.

My name is Elizabeth, we are a family of four my husband Jose, my oldest son Rob age 13 (not affected), and Alex now 2 years old with severe hemophilia B with an inhibitor.

As a mother of a newly diagnosed baby, I felt/feel terrible knowing that my sweet boy has a bleeding disorder and there is nothing in my power to change that. At the very beginning I felt so confused I had no idea what hemophilia was. At times my mental health seemed constantly unbalanced and constantly surrounded by fear of the unknown. Most of the time I would find myself crying about the "what if". Weeks passed by, and we accepted hemophilia to be part of our lives.

Four months later Alex had his first bleed, fear surrounds us again. Our hematologist recommended a port, again fear invaded us. After months, we finally decided to have Alex’s port placed, with high hopes thinking our little boy will have a childhood close to any other child his age. He will have the freedom to be a one-year-old child, to run, play, jump without the fear of getting seriously hurt. The surgery went well, the plan was to infuse factor twice a week, everything seemed so promising…. until 7 days after surgery. After his second infusion he got a huge hematoma on the port site. Sure enough, labs came back a week later with the detection of an inhibitor, now what is an inhibitor? More to learn, fear vanishes our hopes and dreams, an inhibitor could be a terrifying enemy.

Factor was infused twice a week for 2 and a half months. Despite pre-medication for allergies, the allergic reaction was visible for most of every infusion. Instead of waiting for the body to respond to the medication, we decided to stop trying.

There are not a lot of people that will understand the bleeding disorder language, unless they are affected and have an inhibitor: often making us feel alone. Luckily at the camp everyone spoke the same language when it comes to inhibitors, and we continue to learn. CHES gave us the warmest welcome ever and made us feel that we are not alone. The support and compassion we received was unbelievable and have not experienced that anywhere else. The team was very attentive, understanding, caring and knowledgeable and made us feel part of their team.

Each session was educational, informative, and supportive from kinesio taping to chatting with a doctor. It reminded us that there is much more than just living with fear. It provided us with having a better understanding about inhibitors and educating/ preparing ourselves for different situations we may encounter.

It was a beautiful peaceful place to spend time with the family, away from the daily stress-it felt nice to get away. The activities were fun, such amazing experiences with fishing, arts/crafts, aqua therapy, boating, cooking, teen activities…. everything was wonderful.

Meeting with other parents, sharing experiences gives us hope there is a light at the end of the tunnel.

My takeaway from camp - I will be my son's voice, I will learn to advocate for him.

We truly appreciate CHES taking the time and willingness to serve the community families like us. I wish all parents who have a child with an inhibitor learns about this camp, the quality of experience provided is truly a blessing, it felt like a load was taken off our shoulders. Three days went by so quickly, I know there is much more to learn. I look forward to the next camp to continue to learn and interact with our inhibitor family.