This wonderful story was brought to Patient Worthy by our partners, the Cystinosis Research Network (CRN).
The season of giving started off in an unconventional setting for the Moore Family. Chandler Moore, 13-years-old, and his father, Clinton, found themselves in a tattoo parlor. Chandler was born with a rare disease called cystinosis. Due to his condition, Chandler has scars along his midsection from g-tube and mitrofanoff surgeries.
The g-tube was necessary for receiving nutrients and life-sustaining medications while the mitrofanoff procedure allowed access to drain the bladder. Life with cystinosis now means oral medication six times a day and eye drops at least ten times a day. Without these treatments, the disease results in kidney failure and possible blindness. In searching for a way to share his son’s disease, the decision was made: to permanently tattoo both midsection scars on his own body.
“My hope is to show my son that he is not in this alone. I’ve got him. I always will. There is nothing I won’t do for him and if I could take this disease for him I would do it in a second. I would take it for every patient if I could. Also, to show him there is nothing wrong with being a little ‘imperfect’. Most imperfections are absolutely perfect.”
Going to extreme measures to honor this rare disease community is a path familiar to Clinton who is also President of the Cystinosis Research Network (CRN). Last May he spearheaded the first annual Cystinosis Awareness Day (5/7) by walking 57 miles non-stop through tornado warnings, wind and rain. The event was completed in 26 hours and raised over $20,000 for cystinosis research.
Although ten percent of Americans live with a rare disease, funding for conditions like cystinosis is almost non-existent. The children depend on grassroots efforts to raise awareness and funds for improved treatment and ultimately, a cure. To donate, visit cystinosis.org.
According to the National Institutes of Health, a disease is rare if it affects less than 200,000 people. Cystinosis impacts over 600 people in the United States. The CRN is a patient advocacy organization comprised of family, friends, and medical researchers dedicated to finding a cure, developing treatments, and enhancing the quality of life for those affected by cystinosis. Cystinosis is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Without specific treatment, children with cystinosis develop end stage kidney failure.
Learn more about cystinosis at cystinosis.org, facebook.com/CystinosisResearch, Twitter @CystinosisCRN, Instagram @CystinosisResearchNetwork or search Cystinosis Research Network on YouTube.