Over the last couple of weeks, our community of cystinosis families has been enriched by an exchange of “med-art” that began with a Facebook post by Clinton Moore, a dad of a child with cystinosis. He shaped the morning dose of pills that his son, Chandler, takes into a smiley face. He then posted it to make other families smile. I responded to that post with a happy face of my own for my daughter Kacy, who also has cystinosis. That exchange of posts encouraged more parents to post more pictures, some with quotes attached. I then turned those photos into a slideshow that all could enjoy. I felt it was something we could share beyond our small community of cystinosis families. It was something that other families could do to encourage each other, make their kids smile and make some fun out of a situation that isn’t so fun sometimes.
Med routines can be taxing and monotonous. Making med-art for our kids and sharing it with each other is our way of looking at a part of this disease with new eyes and positivity. We are a small community of families who have children with a rare disease, but we are connected to a bigger community of families with all different types of rare diseases. How true it is…”We all came here on different ships, but we’re all in the same boat now.” Martin Luther King, Jr.
About guest blogger Jen Wyman’s daughter:
Kacy was diagnosed at 4 years old, which in the cystinosis world is considered late. Today she is 11 and she lives a beautifully normal life thanks to all the research, education and advocacy that have taken place in our small rare disease world.
From Clinton Moore who inspired the Medart slideshow:
I started doing these med pictures for my son Chandler over a year ago. I decided to post a picture of a smiling face on Facebook with hopes of making another child, parent or caregiver smile. I had no idea what was about to follow. Jen Wyman quickly responded with a med picture of her own. And every day since, my feed has been filled with other families showing their art. It has become an inspiration to many and I believe it has given some a positive look at something that can seem very negative. Some have said they see things in in a different light because if this.
My son Chandler was diagnosed with cystinosis when he was 10 months old. He is now 8. He is amazingly healthy considering he has such a rare disease. Aside from his hourly eye drops and 65 pills a day, he lives a very normal and active lifestyle: Full of energy, full of life and full of love. Smiling and laughing all day, he is my biggest inspiration.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
Translate This page:
SUBSCRIBE TO OUR E-NEWS