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.
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.
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.
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**This passage has been modified for clarity.