Claire 4 Rare Meets Max Chapman

Max’s Legacy

Welcome back, everyone! This month I share with you Max Chapman’s story. Max is a 7-year-old boy who, unable to walk, sees the world from the ground looking up. This is not unlike the Chapmans’ outlook on life. Always positive, always optimistic, always looking up. Developmentally, Max is 18 months old. He is unable to do most things normally like eating or talking. That’s ok though. Max has no use for words. His contagious laugh and euphoric noises say enough on their own. 

Max’s rare disease is called Peroxisomal Biogenesis Disorder. Otherwise known as PBD. Until recently PBD was viewed as three separate diseases, but now it is seen as a set of disorders that form a continuum of one disease which varies in severity. The mild version is known as infantile Refsum disease (IRD). The moderate is known as neonatal adrenoleukodystrophy (NALD). The severe is known as Zellweger syndrome (ZS). Max’s official diagnosis is PBD-ZSD, occurring in about 1:50,000 babies. This disease affects most parts of the body as it disturbs how cells develop and grow. In Max’s case, he has vision and hearing loss, liver and kidney disease, overall muscle and bone issues, and general developmental delays. Max’s prognosis is a probable shorter life. This impending outcome suggests a plethora of emotions primarily pessimistic. However, in interviewing the Chapman family, I quickly realized they are anything but. Todd and Corin Chapman emulate an immense amount of grace, kindness, optimism, and strength. Even through the camera on my computer, I could see Max’s story in their eyes and his pain on their shoulders. Not in a sorrowful way but in a courageous way.

The Chapman family, which includes Todd, Corin, Max, and Max’s older sister Ellie, have found purpose in sharing their story through Harmony 4 Hope. They shared with me the empowering experience that it has become for them. Corin went on to say, “You stand up in front of a room full of medical students and doctors and you think there is nothing that we could teach them. But just being able to share our experience and seeing them want to hear our story is so powerful.” Todd added, “Anybody with a rare disease has such a unique story. It becomes so easy to share it. At the end of the day, despite him living a shorter life, his Legacy is going to be bigger than any of ours.“ This is the inspiring mentality that keeps the Chapman’s going on a day-to-day basis. 

Max was first diagnosed at 14 months old. The devastating prognosis knocked the wind out of the Chapman’s. How does a parent handle news like this? I sensitively ventured into this question with Todd and Corin. They revealed to me that a part of you grieves at the point of diagnosis. Something is already lost. Once you get past that, there is joy. “There’s a lot of joy in raising Max. As stressful as the medical situations are we don’t have to punish him or parent him or worry about what college he’ll get into. We just get to enjoy him.”, Corin added. Together we talked about the blessing of perspective. Every day we see people complaining about things that don’t matter. So many are fighting for their lives to be perfect. Just like the majority of rare families, Todd and Corin’s lives are already imperfect. “That’s just the way it is.”, Todd shared very matter-of-factly. Once you get over that and stop fighting for perfection, you enjoy life so much more because you have that perspective to understand the pure and simple joy that occurs daily. With a child that has a rare disease and a prognosis like Max’s, you’re forced to enjoy every day and there is something very beautiful about that.

What does RARE mean to you?  

Corin – “Exploring the world from a unique perspective. You’re way of approaching the world is going to be different than 7.6 billion other people. It’s all about harnessing the value that brings.” 

Todd – “Memorable. It’s unique and your story isn’t like anybody’s out there. Max is going to leave a legacy.” 

If you live with a rare disease or know someone who does, please email me at claire.bevec@harmony4hope.org. I would be honored to share your story here! If you don’t feel ready to do so, that’s ok too. I would be so happy to just meet and chat with you. I understand sometimes it’s hard to find someone to talk to who also knows what living with a rare disease is really like. We’re rare, but we’re there!