Clinton Moore

@clinton-moore | contributor
Clinton Moore’s son has a rare disease called cystinosis.
Clinton Moore

Strength: Lives Touched by Cystinosis

The following is an excerpt from the book, “Strength: Lives Touched by Cystinosis“ Our story starts in much the same way as many other cystinosis families. Everything at birth was “normal” and soon we settled back at home with a tiny baby adjusting to our new life. But like many of the cystinosis beginnings, it was about to change. When my son, Chandler, turned about 10 months old, we noticed he had a thirst that could not be quenched. When we held him near the kitchen sink he reached at it, as he knew that’s where the water was. He guzzled it like I have never seen. We immediately called his pediatrician. She ordered labs and then it was a waiting game for the results. When the tests came back she called and informed us we needed to head to the only children’s hospital in Delaware, A.I.Dupont Hospital for Children. In the days to come it was a steady flow of doctors and nurses trying desperately to put the pieces together. Seemed like hourly they wanted more blood or took him for another test. Day after day it continued, lots of people, but no answers. After nine long days a “suspected” diagnosis was finally made, but we had to be transported to another children’s hospital in Pennsylvania for confirmation. Two weeks later it was confirmed: Chandler had cystinosis. Once back home and adjusting to our “new normal” we began our own research of what cystinosis was. The Internet can be a place full of knowledge and explanation, but can also fuel fears and worries. We learned all the do’s and don’ts of this illness and what to expect in the coming years. We learned of experimental treatments for corneal crystals and the history of cysteamine. We also learned there were several advocacy groups already established doing wonderful things. These groups seemed to have everything covered from fundraising, to raising awareness, to funding research. We read many stories from other families who were involved in these groups and I honestly didn’t think I needed to do anything as they were already doing so much. I knew I couldn’t make a difference as I am only one person and my comfort zone really isn’t much larger than your average cookie. So for the next eight years I did nothing but treat my son and kept faith that all the ones who were involved in the battle against cystinosis would continue. I really thought all that could be done for cystinosis was already being done. So why get involved? Over this time period I continued reading stories of families who held fundraisers. Certainly not something I had ever attempted before, but I found myself constantly thinking maybe I should. I really doubted I could pull it off or raise much money. Little did we know Chandler overheard our conversations and told us we should try because we were already doing a small event at our home every Christmas anyways. So the next thing we knew, we were planning our first ever cystinosis fundraiser. During the last few weeks before this event, I found myself frantically handing out flyers to anyone willing to take one. I hung them in store windows, left them on counters, even had them on our local news. I wanted it to be a success and it turned out to be just that, but not in the way I thought. You see, our particular fundraiser has a lot of moving parts, a lot of details, required many hours of planning and also brought a lot of stress. I actually convinced myself this would be my first, and my last. That’s was until my phone rang…   The lady on the other end of the call had many questions, and even though she never came out and said it, she had me convinced she wanted to donate. She requested we meet at her home a few hours later, and right on time, I was ringing her doorbell. As I waited for her to open the door, I expected to meet a nice, understanding person, who after a few minutes of talking would give me a donation and then I’d be on my way. I was in for a surprise. When the door opened, I was greeted by an angry lady, yelling at me and waving one of our flyers in my face. She basically screamed at me, asking how I expected her to believe what was on the flyer. She continued with her rant and told me cystinosis was not even a real illness because she had never heard of it, “It’s all made up,” she said, “So you can get people to donate and you can pocket the money!” I was floored. Nearly speechless. I assured her it was a real illness because my son had it and I even directed her to a couple websites to prove it. She told me the websites were also created by me to make my lie even more believable. I ended this rant by saying, “Ma’am, if you don’t feel comfortable donating, then please don’t.” I then left her step and drove home. I have not seen or spoken to this lady since, and now that my anger has far gone, I do feel I owe her a huge debt of gratitude. For it was her who gave me a true look as to just how much work needed to be done. There is still a great need for raising awareness and educating the public about this illness. If not for her, I’m not sure I would have continued my quest to change the future of this illness. I was convinced to never do another fundraiser again, due to the amount of work it took to do our first. Now we have just completed our third and most successful one yet. If not for her, I would likely never have known that cystinosis was so unheard of. If not for her, I would not be where I am today. If not for her, I may have given up. So to the lady in the big brick house…..thank you! We want to hear your story. Become a Mighty contributor here . Thinkstock image by samiola

Clinton Moore

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. 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. 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 community@themighty.com. 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.