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Hi! I’m Cannon. Some of you may already know me since my mom likes to brag about me 🙂 . But for those of you who don’t know me or my story, I was diagnosed with hypophosphatasia (HPP) when I was 18 months old, so I don’t remember much about my diagnosis. But my mom started Soft Bones to help me and other people like me living with HPP.
I think that when people learn I have HPP, they expect me to tell a story about having a hard life or focusing on all the things I haven’t been able to do. But compared to other people, my life is pretty normal. I do things I like and feel very fulfilled.
Cannon poses for the camera.
When I think about overcoming challenges with HPP, one story that stands out in my mind is when I was in 4th grade and I had to do physical therapy (PT) during school. I did not like PT at all. It was my least favorite part about going to school. I would get pulled out of gym class, which was always something I looked forward to participating in, to endure one-on-one PT with a therapist. Then one time I remember she didn’t show up and I was able to go to gym class with my friends. It was the best day ever! The only thing better than gym was recess. Later that day I was on my way to recess when suddenly she appeared and was walking toward me. I looked at her and thought to myself, “I’m not doing this today.” And I took off running as fast as I could in the other direction! The crazy part was she didn’t even chase after me! I was able to enjoy recess – it was the best day. However, it came back to bite me as I had a lecture at my next PT appointment.
Cannon and Grace with their hpptogether shirt.
I’ve actually had some cool experiences that I would never have thought would come with having HPP. I was able to travel down to Washington, DC to speak with representatives to advocate on behalf of the National Institutes of Health about the importance of funding research for rare diseases, specifically studying dental problems that come with rare bone disease. It was during this trip that I met Gaten Matarazzo, who plays Dustin in Stranger Things. I was completely starstruck. I remember we were going into a meeting with him and I couldn’t stop staring at him. This was right around the time that Stranger Things was very popular and everyone was watching the first and second seasons. Let’s just say he was very famous at the time.
Cannon meets Gaten at a rare disease health conference in Washington, D.C.
It’s really hard to tell you my biggest challenge with HPP because ever since I was little I’ve been very fortunate to have been surrounded by people that support me and help me whenever I’m struggling. One of the things that I have found the most challenging is definitely the surgeries for my Chiari malformation. I have a skull deformity that happens in some patients with HPP and I’ve had to have a few surgeries as a result. When I had my 2nd Chiari malformation surgery, I developed an infection and was hospitalized for nearly 2 months, bedridden for a very long period of time, on antibiotics and steroids. Ever since then, I feel like my metabolism has never been the same. My joints and bones struggle to hold the weight I have gained and it hurts.
Cannon recovering from surgery.
Cannon getting an ultrasound.
Now that I’m 18 and a freshman in college, I have been trying to become more independent. I had to figure out how to get my medication shipped to my college dorm. Because it’s refrigerated, it comes in a huge box, and at my college, the mailroom is pretty small. I was able to speak with the people who work there to figure out a system that works. Now, I’m trying to learn more about which doctors are for what, and how and when to contact them. It is a lot harder than you may think. My mom has always been in charge of all of the doctor stuff, shots, and just my health concerns in general. But now since I’m in college, I have lots of responsibilities like doing my own shots and keeping a consistent schedule, eating healthy, taking medicine, and making sure I’m keeping active while in school. All of this is new to me and comes with having HPP and is something I have been working on for the past couple of months.
Cannon poses with his high school diploma and graduation gown.
Cannon in his dorm room on campus.
All in all, I’m really blessed to have been able to meet so many people who have HPP and to live a productive life. I am so grateful to all of the families and friends who I have met over the years and realize how lucky I am to be surrounded by a supportive community that knows and understands what I’m going through and helps me to feel like what I’m going through is normal. I’m hopeful that researchers are still searching for new treatments to make living with HPP even better.
Cannon poses with a “Road to the Cure” street sign.