A father of a son living with cystinosis reminds us he is “not raising a rare disease” but “raising a human”

UpdatedAugust 28, 2020 · 4 minute read

Clinton is determined to make noise and be heard for his son’s rare genetic disease: cystinosis.

By Catherine Cooke Clinton, Chandler, and their community on a 57 mile non-stop walk for cystinosis

You might call Clinton a little over-the-top. He’s well-known in his community for his elaborate Christmas wonderland event on 30 acres of land. In its final year, the event drew 604 people who enjoyed 25,000 lights, hay rides, fire trucks, warming stations, food trucks, BB gun shooting ranges, face painting, and more.

After five years of the Christmas extravaganza, Clinton changed to a new yearly event: a 57 mile non-stop walk on a track over the course of 24 hours. That’s 228 laps!

Why the big gestures? Clinton is determined to make noise and be heard, not for his own notoriety but to get people talking about something often shut out: a rare genetic disease his son is living with called cystinosis.

“The whole point of that walk is to be absolutely as absurd and redundant as possible,” Clinton explains.

“It’s done that way on purpose. I can’t get cystinosis. I wanted to somehow feel the effects that he feels. With cystinosis, the best way to be healthy is to be repetitive and compliant. Patients need to be very repetitive with their medications. They live on a schedule.”

57 miles comes from the 57-kb deletion on human chromosome 17p13 that is believed to cause the extremely rare disease. Cystinosis is estimated to affect only around 2,500 people in the world, and Clinton’s son, Chandler, is the only known case in his home state of Delaware.

The disease causes a buildup of an amino acid called cysteine. Common symptoms include excessive thirst and urination, and it can cause major kidney damage.

When Chandler was just 11 months old, his father remembers that he had a “crazy excessive thirst for water. He knew that water came from the kitchen sink. If you were holding him near the sink, he would kick and scream for the faucet. One day, we went into the grocery store, and he crawled over to the bottles of water and just cried.” His parents knew something was wrong.

After a two hour drive to the closest local children’s hospital and a nine-day stay, they finally received the diagnosis of cystinosis and walked out of the hospital with “a box full of lots of supplements like iron, potassium, sodium bicarbs, calcium; all of these things that people like you and me would get from food.”

For the most part, Chandler is able to live a fairly normal life. “The only thing that limits him is his need for water,” Clinton shares. “He drinks around 4-5 liters of water per day, and he has to use the restroom often. He takes medicine every 4 hours and eye drops every hour.” Just like that 57 mile walk, living with cystinosis is incredibly repetitive, but you must keep going.

Clinton’s grand gestures have not gone unnoticed, and a full-length documentary was just released about Chandler’s life with cystinosis and Clinton’s life as a caregiver. He describes it as “a film about strength, perseverance, overcoming obstacles, challenges, triumphs, failures, and so much more” and hopes it resonates with the broader rare disease community and public.

“I was always a believer that one person cannot make a difference,” Clinton admits. “I was always thinking that you had to have millions of people with the same exact vision to make the slightest change. It took me eight years to realize that one person can make a difference if you put yourself out there and try.”

One of the ways Clinton is determined to make a difference is by signing up with AllStripes, a platform for the rare disease community to digitally store their medical history while contributing the anonymized data to rare disease research.

Clinton loves that “AllStripes gives rare diseases an opportunity to very, very easily obtain the possibility of new research. They give the communities they work with hope, and they give the patients and the families an opportunity to participate in a way that is really simple.”

Clinton is well aware that he could be dealing with a much worse scenario, and he counts himself lucky that there are already therapies in place for cystinosis. However, “Once you receive a therapy, are you supposed to stop research? No, that’s foolish! There’s always the possibility that there could be a better or improved therapy, and, ultimately, there can be a cure. Why would I not jump on an opportunity to form a relationship with AllStripes to give [the cystinosis] community the best possibility and outcome?”

Above all, Clinton’s actions all boil down to wanting the best possible life for his son. He reminds us, “I didn’t raise a child with a rare disease. I raised my child into an honorable young man. I’m not raising a rare disease, I’m raising a human, and the rare disease is just an extra part of what it takes.”

To hear more of Clinton and Chandler’s story, you can watch the “Walk In My Shoes” documentary on Youtube.

If you are a patient, or family member of a patient, with cystinosis and are interested in contributing medical history to advance research learn more at allstripes.com/cystinosis.

Originally posted at August 28, 2020

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