The documentary “Walk in My Shoes” takes viewers through a lifetime with cystinosis with Chandler and his family. After Chandler was diagnosed with the rare disease as an infant, making him the only patient in their home state of Delaware, the family watched their healthy little boy take on a lifetime of making healthcare a lifestyle. The documentary makers channel the ins and outs of his family and other patients in the cystinosis world to tell a story of perseverance and acceptance, loss and disappointment, and how to continue with optimism and love when the disease keeps kicking.
The Diagnostic Journey
Chandler’s mother, Annie Moore, was put on alert when he was just seven months old when his thirst was unquenchable, and his appetite was little. Annie recounts how he would want water more than his milk, pointing at the faucet in the kitchen. The doctor said it was acid reflex— but Annie knew it was more. He wouldn’t eat, drink- just water. When the doctors did some blood work and saw his labs, they called up Annie to tell her to bring Chandler to the ER immediately. His labs were unthinkably wrong, so wrong they thought they must be a literal lab-based error. He shouldn’t be conscious. After a typical run around searching for answers, they finally found a doctor who knew the key to their problems: cystinosis. From there, the families lives changes forever.
Cystinosis
Cystinosis is a rare genetic disease that causes amino acids to build up and crystalize in the body. While there are a variety of types, this crystallization typically occurs in the eyes, organs, and kidneys and can cause severe organ failure. Symptoms can include kidney failure, vision sensitivity and blindness, and a variety of other symptoms.
Chandler’s father Clint Moore tells viewers,
“Its almost just gives you this numb feeling for a while. You’re overwhelmed. You have this perfect healthy boy that now all of us a sudden has a million problems.”
They were dropped from their insurance, dealt with different bones breaking, new flare ups, and the knowledge of the limited lifespan for patients. He continued,
“You look it up online and you read all these articles that pretty much tell you to hug him tight every night because you’re not going have him long, and that’s pretty much it.”
Acceptance
The movie takes us through the diverse and complex phases of acceptance of life with disease. Sometimes as a viewer, it’s draining to see how the horrors of this disease takes its tole on Clint, Annie, and Chandler. Their honesty and compassion makes you feel close to them and care about their wellbeing. The family does not hold back in telling the filmmakers the most sensitive and taxing truths about this time. Staying dry eyed is difficult; the disease is inexhaustible, with hits from every angle.
If it wasn’t for the charisma and warmth of the protagonist, it might be too hard to watch. Instead, it is delightful to see how brave Chandler can be. I marveled at Chandler’s attitude and charm. When faced with pain and set backs, he shows up and shows how much he could manage, often with a smile. He insists on being held to the same standards as other high school students, gets involved as the manager for sports teams, and has his own unique charm that attracts a community to rally behind.
The movie reminds us of the good fortune of a treatment option. The disease is lethal, but medicine can give patient’s decades of extra years. The schedule is rigorous- four times a day, precisely six hours apart. It works though, and patients know their good fortune. Heidi Hughes, another patient in the film, said,
“Every morning I think each of us wake up and make the decision to keep living. By taking our medicine and by physically taking care of ourselves, that’s our conscious way of saying, ‘I’m here, I’m going to stay here, this is my choice. I don’t care what you throw at me, I’m going to take these pills, and I’m going to do it tomorrow too, and I want to keep living. I think we make these choices every day.”
Finding A Cystinosis Community
The movie begins foreshadowing a change that forever reshaped their relationship with cystinosis: becoming apart of the cystinosis community through the Cystinosis Research Network, the CRN.
The disease that had made them feel on an island began to connect them to a wide network of families going through the same thing. They realized the value of meeting people who could finally relate- they learned and shared tips, and told familiar stories. They talked about what to do about the haunting odor caused by the medicine, how to stay on a medicine routine, and how to deal with the constant shadow of cystinosis. As they began to connect, they established the foundation of a support system that has continued to carry the family through their disease experience.
Chandler and his parents give viewers a lot to think about. How to not stay stuck in our grievances, but it’s okay to cry too. They showed us how full of a life Chandler continues to have, rich with loved ones. Chandler gave his two cents, “If you smile while having this rough life, other people will too.”
Watch Chandler and his family here.
