Mason

“When I was 11 years old, a psychiatrist asked me if I blamed myself for having a disease. I am pretty sure I had a bit of side-eye at that question, but then looked her in the eyes and responded, ‘Not at all. I don’t wonder why this happened to me or blame anyone, of course this can happen, it can happen to anyone. A lot of bad stuff happens to good people everyday. You just have to figure out why you were chosen and what you will do about it.’

I didn’t know it at the time but this would be just the beginning of my journey and advocacy in helping people better understand chronic illness and better understand Crohn’s disease.

I was diagnosed with severe Crohn’s Disease, Pancolitis, and Peripheral Arthritis in June of 2020 at the age of 11 years old. I spent almost 2 months at Rady Children’s Hospital in San Diego and was on gut rest for 4 weeks. It was very difficult not to eat or drink anything for 4 weeks. I received at least 5 blood transfusions and had CT scans, MRE’s, Dexa scans, colonoscopy, endoscopy, and a PICC line. I was on steroids that changed the way my face looked and Methotrexate which caused hair loss. It was overwhelming and very scary.

It has been almost 3 years since my diagnosis and my life has changed in so many ways. I have had hundreds of appointments and because of the severity of my disease I am on treatments not yet approved for children. Most research and approved drugs are on and for adults. This makes it extremely hard with insurance to fight for what my doctor says I need to live and have a better quality of life. I am on two biologics, each at every 4 weeks. This means that every 2 weeks I am at Rady Children’s Hospital for a treatment through IV infusion or injection. 

It was a tough adjustment to have to be at the hospital so much, and there is no end to the treatments, they are for life. Each case of Crohn’s disease can vary so much in treatments and there is no one way to treat it. This is why some people might have different perceptions of the disease depending on who they know with it.

I am also immunocompromised due to my treatments and that has been especially challenging. I can’t eat in restaurants or do normal things most kids do. I am homeschooled which has been awesome so I don’t miss any school and can continue my education with no interruptions. We get creative so I can spend time with friends and I am thankful they are so understanding of my disease.

I think what frustrates me is that people don’t understand that there is not only the physical, painful disease aspect of Crohn’s disease but also the painful, monotonous treatment aspect to keep it in remission. And these treatments are forever. It puts so many limitations on your life in so many ways that most people never see. They think that if you say you are in remission it is gone. You must feel great!

But that isn’t the case with Crohn’s disease. There is no cure. There is no bell to ring to celebrate the victory over chronic illness. Remission means the disease isn’t currently active, but that doesn’t mean it is gone. It took me over 2 years to reach ‘lab’ remission, and since then I have had two flares. Flares are when the disease suddenly takes a turn and you are symptomatic again. Remission is a goal but not always sustainable. 

Life doesn’t always go as planned but just because it has changed doesn’t mean it can’t be wonderful! 

I have found a purpose and strength I never knew I had. With the support of my parents I wanted to become empowered and do something about the treatments and help others. 

My wish is to find a cure but until that happens, I will fight to raise awareness and make this disease visible.

Nobody with any chronic condition deserves to feel invisible. I want understanding and compassion, I want people to see the ability of these warriors to dig deep and overcome. Most of all, I want anyone with any chronic illness or disease to know you matter and you have the power to make change happen.

I started to take control over Crohn’s disease when I began to use my voice. I was 12 years old I was asked to be the mission speaker for the 2021 Crohn’s and Colitis Champion’s of Hope Gala. I was also asked to be the face of the Legacy Foundation, another incredible foundation that not only supports the Crohn’s and Colitis Foundation, but other incredible organizations. The San Diego Blood Bank asked me to speak at a ribbon cutting ceremony for a new location. They invited me back to speak at more events, do local media, and thank donors. I was invited to emcee the 2022 Crohn’s and Colitis Champion’s of Hope Gala in front of over 400 people. This was an honor that was life changing for me. I have done fireside chats with the CEO of Prometheus Biosciences and will soon be attending the launch of phase 3 of trials on a new treatment for Crohn’s Disease.

In 2021, my mom and I approached a local senator and assembly member to create a law that would not allow someone with IBD (or any chronic illness that requires emergency restroom use) to be turned away. I was upset knowing this could happen in my state and wanted to change that, so we did. In August of 2022 my name was read on the senate floor as the bill passed unanimously and the law went into effect in January 2023. 

In the summer of 2022 I took a class with Story Xperiential with Pixar where I created a story reel that chronicled my journey  through a brave little slice of pizza named Reggie. To my absolute joy (I was speechless!), it won best youth story reel. My mom helped me turn it into a book and used my illustrations. We published ‘Not Your Average Slice of Pizza’ in September 2022 and have been fortunate enough to donate copies to our local hospital, Make A Wish, San Diego Blood Bank, and to other children we see at the hospital. 

We run a family business called Karmatude Candles where we donate part of each sale to the Crohn’s and Colitis Foundation. I am so proud to be a part of it and so thankful to not only have a way to help the foundation fundraise, but to be able to raise awareness simultaneously.

I am happy to share these achievements because my hope is it shows kids and adults that people are listening. We can find ways to be empowered in this disease, find ways to fight back and to spark change. But most of all, it is important to know that people do care, they just aren’t always aware of conditions out there. 

Choose courage. Choose bravery. Raise your voice. The only way to find a cure or better treatments is to be visible and to share our stories. Promote kindness, embrace support, and never, ever give up! We are warriors.”

Mason
San Diego, CA