Cystinosis isn’t something that we sit around and think about all day. Most days we don’t think about it at all; we just take our medications and live our lives
As a part of our “Unstoppable” series, I had the pleasure of interviewing Chandler Moore.
Chandler is an unstoppable teenager living and thriving with a rare disease called cystinosis. He fits in flawlessly with all of his peers and does nearly everything a young man his age would be expected to do. Cystinosis does not define him in any way. He has had many challenges and obstacles throughout his life so far, but faced every one of them head on. At only 15 years old, he has changed the lives of many and continues to inspire.
Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?
My name is Chandler Moore, and I was diagnosed with cystinosis when I was just 10 months old. Cystinosis is a rare genetic disease that affects about 500 to 600 children and adults in the United States. It’s caused by a buildup of cystine in the body, and this buildup causes crystals to form and harm the body.
I do not know a life without cystinosis — sometimes it’s tough, but I do not let it stop me. Today, I am 15 years old and live a fairly normal life.
Do you feel comfortable sharing with us the story surrounding how you became ill? What mental shift did you make to not let that “stop you”?
At 10 months old I developed an unquenchable thirst. My pediatrician suspected diabetes but after lab tests came back, she quickly realized it was not diabetes and I was referred to the Nemours/Alfred I. duPont Hospital for Children. I spent the next nine days there. Many things were suspected, but a nephrologist told my parents she was sure it was cystinosis. I was transferred to the Children’s Hospital of Philadelphia for another blood test, and two weeks later I was diagnosed with cystinosis.
I wake up every morning and do what needs to be done. I don’t dwell on it. My medications are important to maintain the health that I have. So, I take them and do my thing. I’ve learned to take it day by day, to concentrate on what’s going on now, to be aware of the future and prepare for what I can. I do not sit around and worry about tomorrow.
Can you tell our readers about the accomplishments you have been able to make despite your illness?
Despite living with cystinosis, I have completed three years of the Georgetown Junior Police Academy. I have also helped manage a Pop Warner football team for four years, as well as played little league baseball for four years. Additionally, I’ve helped my parents organize fundraisers for the Cystinosis Research Network for nearly a decade.
What advice would you give to other people who have disabilities or limitations?
Don’t let anything hold you back. Do what you’re able to do, and don’t drag your disease or limitation along with you. Don’t give up and keep fighting.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
I would say that I am most grateful for my parents. They helped get me to where I am today, and they are the ones that kept up with my appointments and medications when I was too young to know what was going on. Even today, they are who I lean on the most. I know they always have my back and will help me make decisions.
How have you used your success to bring goodness to the world?
I try to use my success to be an inspiration toward others. I try to always keep a smile on my face, especially if I see someone who needs it. For example, the Cystinosis Research Network, a national advocacy group that helps build support for the cystinosis community, recently premiered a documentary on YouTube featuring our family. The new documentary is a story of strength, and it aims to bring awareness to the condition that has greatly affected my life. It shows that even though you may be having a rough life, you can still make a huge difference in this world. I hope that everyone finds it inspiring and uplifting.
Can you share “5 things I wish people understood or knew about people with physical limitations” and why.
- A kidney transplant is not a cure. After transplant I will still have cystinosis, just not in my kidney.
- Even though I appear to be physically healthy, that does not mean that I am. Many diseases and disabilities are not visible
- Even though I have cystinosis, it does not mean that I am disabled. Some people hear you have a rare disease and are surprised when you’re not in bed or in a wheelchair. I have found that every cystinosis patient is different.
- Cystinosis patients don’t want to be treated any differently than anyone else. We are still humans, just living with a rare disease.
- Cystinosis isn’t something that we sit around and think about all day. Most days we don’t think about it at all; we just take our medications and live our lives.
Can you please give us your favorite “Life Lesson Quote”?
My dad shared a quote with me a few years ago and it’s always stuck with me. He said, “If you ever think you’re too small to make a difference, try spending the night in a room with a single mosquito.”
We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂
I have always been a huge fan of the television show “Impractical Jokers.” The four guys on there (Murr, Joe, Sal, and Q) are hysterical. They have gotten me through many of my rough days. I’ve laid in the hospital and have been so down, but their show always made me laugh. My dad and I have even mimicked some of their challenges in stores, but don’t tell my mom. Still to this day, this is my favorite television show.