Why I #CareCureThrive: Three Decades of Surviving & Thriving
In 1984, motorcycle enthusiasts in Atlanta came together to support the family of a young girl who had been diagnosed with a brain tumor. This motorcycle charity ride became the Ride for Kids and eventually the Pediatric Brain Tumor Foundation.
That young girl who inspired the first Ride for Kids was Shaye Sauers Kilby.
“As a survivor of childhood brain and bone cancer, I survived a deadly malignant brain tumor,” she shares as part of our Why I #CareCureThrive series for Brain Tumor Awareness Month.
Shaye’s story was not only the inspiration for Ride for Kids; her father Rick and other parents established the Brain Tumor Foundation for Children, a direct patient and family services-oriented organization based in Georgia.
The BTFC and PBTF joined forces in 2014 with the BTFC becoming the Pediatric Brain Tumor Foundation’s Georgia Chapter, the first in a series of chapters to connect with families locally.
This chapter growth is one of many ways the PBTF is working to achieve a world without childhood brain tumors.
As the pediatric brain tumor community comes together to fight for this future, stories like Shaye’s remind us of the individuals at the heart of our work:
I had total brain radiation at five months old. At nine years of age, I had a year of intense chemotherapy for bone cancer in my skull.
After enduring multiple surgeries, two bouts of spinal meningitis, many hospitalizations and more procedures than I ever want to remember, I returned to living a fairly normal life.
At 15, I successfully had two metal rods implanted from my neck to my tailbone to ease the spine curve and pain caused by scoliosis. In 2008, I was diagnosed with Systemic Lupus and Sjogren’s Syndrome. These are the same autoimmune diseases that my mother suffers from.
My blood type is B+ and I try to live my life that way.
I still spend enormous amounts of time in doctors’ offices and having tests, scans and rehab. I deal with ongoing pain and serious issues from my brain, neck, and back surgeries. I also have heart, muscle, thyroid, and eye problems as a result of my harsh but lifesaving treatments at such a young age. Radiation has damaged my balance and coordination, fine motor skills and strength. The area of my brain that deals with multitasking, problem-solving, spatial concepts, and math skills have been greatly affected. But I consider myself blessed each and every day.
All my life I have fought the odds to be here today, through hard times and the good times. I have always kept a smile on my face and a positive attitude, and never let things get me down! I describe my disabilities as a struggle at times, but I have learned that others have it harder than I do.
For the past three years, I have volunteered two days a week at Children’s Healthcare of Atlanta at Egleston, where I was treated originally.
Giving back to me means helping out where you feel needed and feeling great when you do. It has certainly opened my eyes to a whole new world. I am now 37 years old and I believe in never looking down on a person or calling them names just because they are different or do things differently than I do. Everyone has feelings. Words and tone hurt.
I am beyond lucky to be able to share my life story with children and parents to give them hope. It is such a gift to help where you will feel needed, and have purpose in your life. Happiness is touching the life of another.
I am now 37 years old, and my life has now started another chapter. Two years ago, I married my best friend and love of my life. My husband Darren makes my life complete.
Brain Tumor Awareness Month may be coming to a close, but Shaye’s journey continues. As do the journeys of the 28,000 U.S. children battling the deadliest childhood cancer.
Like Shaye, these children’s journeys are filled both with challenges and victories. And like Shaye, they inspire us to keep fighting for futures.
How we will do this is set forth in the PBTF’s new Strategic Plan, which outlines our 2017–2019 roadmap with objectives looking ahead to 2025.
You can read the full Strategic Plan here, detailing our goals to:
- Equip, educate and empower families
- Expand the field of pediatric brain tumor research
- Motivate action to support our mission to Care. Cure. Thrive.
The success of this plan rests on all of our shoulders. We need your continued partnership and support to fight for futures like Shayes’s.
Learn more about our mission and how to get involved at www.curethekids.org/mission. Families in Georgia can learn more about our local services and events at curethekids.org/ga.
