A rare, progressive and fatal disease. A little more than a year ago, this was the diagnosis given to 2-year-old Katherine Belle in Kentucky. It was a devastating and isolating realization for KB’s parents – if only for a little while.
While KB’s diagnosis has been a pendulum of answers and questions; more questions than answers. We know that KB has a rare disease, but we also know she’s not alone.
Her father is an attorney and her mother has a growing list of professional experience as a blogger, photographer, social media explorer and, most recently, Rare Disease Hunter. Together they have started a blog Hope For Katherine Belle and a Facebook page detailing their journey to find a cure for KB. Their sites receive considerable attention (not just because KB is cute) because they are using social media tactics to reach out to a big world to find a cure for their little girl.
For KB’s cause or any other organization, it is critical to engage others.
They rally. Those of us who surround KB and her family struggled with ways to comfort them and help find a solution. We felt equally helpless after each diagnosis. But, KB’s parents, in a time of despair, help redirect the energy to projects that would make a change and even find a cure. At first the supporters began by sharing KB’s story with others. They posted their #hopeforKB message on their on social media networks. Photos of messages in the sand, on chalkboards and displayed in lights were posted by friends across the nation. From KB’s parents high school classmates to world-wide celebrities like Cee Lo Green and Courtney Cox, the hashtag trend elevated KB’s message to a national audience but also provided a great boost to KB’s family and the tribe of followers.
They call. Since then, the tribe has been called to other actions beyond sharing and spreading – things that will have a tangible impact. They’ve been asked to contact their U.S. representatives encouraging them to fund the National Institute of Health’s research programs, to spread the word about Rare Disease Day and, to help provide for medical expenses not covered by insurance.
They shared. KB’s parents told a hard and honesty story. I don’t know how they have been able to see through their tears to do it. I could barely see though mine to read the Dad’s raw and beautiful account of relaying the doctor’s call to his wife.
On the advice of friends – and probably therapists – KB’s parents continue to publish the joys, journey and other pivotal moments since their daughter’s first diagnosis. By sharing their story, they have shown that KB’s disease is not as isolated as they thought. Their social media outreach has linked them with dozens of other parents in the world facing other rare diseases. Through these connections, KB’s parents have learned about research programs, connected with medical specialists, and received a great deal of emotional support.
Their outreach has resulted in an article in The New York Times and their efforts have gained attention from Kentucky Senator Mitch McConnell. More importantly, it has linked them to professional medical experts and linked them to testing and treatment options that may bring them closer to a cure. Most importantly, it’s connected them with other families also seeking a cure for rare disease.
As a parent, I imagine that KB’s Mom and Dad would prefer to not have this story to tell and share with the world. But they do. The world is amazingly big, but approachably small for a rare little girl in Kentucky.
Nicole Candler, APR is owner of Nic Creative Public Relations in Louisville, Kentucky. She is a member of the Kentucky Commission on Women where she met KB’s remarkable mother, Glenda McCoy.