When My Son Wrote What He Really Thought About His Rare Disease

My son Chandler was diagnosed with cystinosis when he was just 10 months old. He is currently 10 years old. There have been many ups and downs along this journey, with many medication adjustments, hundreds of doctor’s appointments, several surgeries, many tears and many laughs.

Cystinosis is a rare genetic metabolic disease. It causes an amino acid called cystine to accumulate in various organs. The cystine will crystalize and cause damage to those organs. The kidneys and eyes are typically affected. There are only an estimated 2,000 people in the world with cystinosis, and 500 of them live in the U.S.

chandler moore
Clinton’s son, Chandler.

One thing I have tried to implant in his brain is that even with this illness, anything is possible. I tell him constantly there is nothing he can’t do if he sets his mind to it and gives it his all. One of my favorite things he often says to me is, “Cystinosis can tag along, or I will drag it.” He refuses to let cystinosis stop him from anything, even if it makes it more challenging.

One thing Chandler rarely ever does is talk about his feelings related to cystinosis, how it makes him feel or what he thinks about it. That was until September 2015, when we attended a cystinosis town hall meeting. There, Chandler got to spend time with other young cystinosis patients away from us parents. They could do and say whatever they wanted. It was an amazing experience for him to not be the only one taking all the medications and eye drops. All the other kids were doing the same thing as him. All the patients had time to spend with a mentor, and she showed them different ways to express their feelings about their illness. Unfortunately, the weekend quickly came to an end and we went back home.

child's note handwritten on paper
Chandler’s essay about cystinosis.

After about a week back to the normal grind, Chandler came home from school and said he had something he wanted to show us. He reached in his pocket and pulled out a folded-up sheet of paper and handed it to me. He said his class had some spare time, and their teacher told them to do some reading or writing. He said he decided to write some of his feelings about cystinosis. When I unfolded the paper, I read these words:

“Having cystinosis is hard. It involves a lot of pills and a lot of surgeries. Eventually you will have to get a kidney transplant. Also, you have crystals in your eyes and you have to take eye drops to help. And yes, this stuff gets annoying, but I don’t care as long as I’m still here. I will keep doing it.”**

At first I was shocked Chandler had opened up and written this. He had never done it before. Just these few words have taught me so much. Rare diseases are tough. But no matter what it is you’re going through, you must keep pushing on. No matter how tough it gets, you have to keep fighting. Never give up. No matter what they say the future holds, you have to live every day to the fullest. None of us are promised tomorrow. Live today like it’s your last day.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

**This passage has been modified for clarity.

Find this story helpful? Share it with someone you care about.

Related to Cystinosis

How My Sister Helped Us the Day Our Daughter Was Diagnosed

When my daughter was born, my sister was over the moon in love with her. She didn’t plan on having any children of her own and was more than happy be the cool aunt. My children could go snowboarding with her, have awesome dance party sleepovers at her place or go to her for problems [...]

When a Book Called My Daughter’s Rare Disease ‘Useless Information’

A family in the cystinosis community made a shocking and upsetting discovery this past week. We’ve all seen those bathroom books before. They’re usually full of strange, little known facts meant to elicit a few chuckles — something I’m assuming was meant as a lighthearted gift. So when I saw a picture of the cover of a [...]

My Daughter’s Rare Genetic Disease Taught Us the Meaning of Strength

Dear Cystinosis, It’s been about a year and a half since you entered our lives, and I’m still not entirely sure how I feel about you. I will probably never forgive you for choosing to live within my innocent baby girl. She is the most precious thing in my world and does not deserve to [...]

A Message for My Daughter’s Tuberous Sclerosis

Dear (not so dear) Tuberous Sclerosis, I despise you. You’ve brought pain to my family since the day your name was so gravely spoken. Your “incurable” tagline ripped through my heart like a million razor blades, tearing it to shreds. You’ve made me doubt myself and my ability to care for my own daughter. Your [...]