By Emily Robison
When our son Blake was diagnosed with Fanconi anemia in 2013, our world instantly changed. He was two years old and we didn’t have many medical concerns. Never in a million years would we have predicted all that Blake and our family would go through.
After that devastating phone call, of course, I Googled. I soon found the Fanconi Anemia Research Fund and information about FA Family Camp. I knew that we just had to get there. We live in Washington state, and traveling across the country with a two-year-old was not very easy.
Once we got there, we felt like we belonged. Our sweet Blake charmed all the volunteers and loved having so many people to play with all day long.
As parents, we were able to attend numerous presentations by doctors about a range of topics. We were overwhelmed by all the information and honestly a little scared. But most of all, we felt empowered.
Learning all that we could about Fanconi anemia gave us something to do and focus on instead of just waiting for things to happen to Blake. We felt empowered because we could bring information and ideas to our doctors. One year, I was able to speak one-on-one with an endocrinologist at camp. I took the advice she gave me back to our doctors in Seattle and started Blake on medication. As a mother, I felt like I was contributing in a situation that can often feel so helpless.
We attended camp every year until Blake’s bone marrow transplant in 2018. Blake and our younger son, Bryce, would excitedly countdown to camp every year, talking about what group they would be in and what friends would be there.
Attending four years of FA Family Camp medical presentations prepared us in so many ways for transplant. We heard about different transplant protocols and spoke at length with other parents who had been through the process already.
FA Family Camp is not just about scientific presentations. I asked my boys what their favorite part of camp was, and they both immediately said, “the friends!”
Blake made a lifelong friend, Zach Becker, in 2016. They bonded over their love of dressing up as superheroes. In 2020, they started to video chat. Now, they chat weekly, and we are traveling to New York City in March to attend Zach’s Bar Mitzvah. Blake and Zach didn’t talk about FA much until recently. Blake was able to assure Zach that growth hormone shots get easier. They talked about where they each do the shots and if it hurts. I’m so glad they have each other.
Above: Zach and Blake in 2016, and in 2023 (right).
Camp has and always will be a place where every single person knows what we are going through. Being around people who understand our lives on a different level is indescribable. It’s an amazing feeling when we meet another FA family for the first time. There is an understanding and an instant connection.
We now have an arsenal of people who are ready to help us in any way they can with their encyclopedia of FA knowledge and experience.
We may be headed to a new camp location with new traditions, but the people are what matters most. I know that there will be parents, caregivers, and children that our whole family will be able to learn from. We will learn about each other’s struggles and share in their celebrations. We will laugh and cry together. We will create new memories and traditions. We hope to see FA Family Camp filled to capacity.
Let’s meet at the Painted Turtle.
