According to PW writer Kathy, there was a shining star at Rare Disease Week on Capitol Hill’s Rare Artist Reception.
Olivia is the youngest of four daughters. She was diagnosed at the age of two with primary ciliary dyskinesia, PCD.
Following her diagnoses her parents sought genetic testing for their oldest daughter, for she too had had frequent lung infections. Unfortunately, this daughter also came back positive for PCD.
Children with PCD have many ear infections, nasal congestion, sinus infections and chronic cough. Most seriously, they have repeated lung infections which damage the lungs over time. Olivia and her sister have both had to be very brave! PW was fortunate to meet Olivia and her Dad Tony, at the Rare Artist reception.
When asked if any of the artists would like to say a few words, petite Olivia was the only one to respond. She read the story of her painting, reprinted here with her permission:
Hi, My name is Olivia Shapow. I’ve titled my drawing, “Triumphant Tiger”, because this is how I feel when I am sick for awhile and then get better, triumphing over my rare disease, Primary Ciliary Dyskinesia or PCD.
PCD is a rare genetic, progressive lung disease where my cilia all through my respiratory tract don’t move to clear our bacteria and particles. This means I get lots of infections in my lungs, sinuses and ears. It also causes progressive lung damage as I get older which sometimes requires a lung transplant.
I also get lots of tummy aches and headaches. This disease has many similarities to cystic fibrosis but is more rare. There is no cure for my disease, and I ask that you would please support research for rare diseases to help kids like me.
I have been very brave, (like my tiger), ever since I was a baby for the many pokes, tests, treatments and medicines I need, and I will keep being brave until a cure is found. Thank you for viewing my art and listening to my story.
Her courage in taking the microphone, then led others to also share their stories. She took to heart the wise words of Robert Louis Stevenson:
“Keep your fears to yourself, but share your courage with others.”
