July is Bereaved Parents Awareness Month, and the Pediatric Brain Tumor Foundation is honored to link arms with Eternal Star families like Ryan’s. We thank Ryan’s dad Bill for sharing his son’s journey and forwarding the PBTF’s mission through the Western Pennsylvania Ride for Kids. Support his fundraising efforts in Ryan’s memory here.
“You know what, I have the best life!” — My son Ryan said more times than I can count, and that’s the way he lived his short 22 years on earth. He was an example of courage, strength and determination in the midst of great mental and physical adversity.
In 1995, Ryan was diagnosed with a juvenile pilocytic astrocytoma (JPA) brain tumor at just 10 months old. He had three resection surgeries and multiple rounds of chemotherapy and radiation therapies. The assaults to his young and growing body left him with left-side weakness, loss of vision in his right eye and poor vision in his left, and hearing loss in both ears.
But Ryan didn’t complain or dwell on his struggles and disabilities. Instead, he took full advantage of his God-given talents and abilities to inspire and enrich the lives of others.
One of many ways he did so was by volunteering with countless charities — serving homeless individuals alongside Outreached Arms, advocating for young people with disabilities through United Way’s 21 & Able initiative, and earning Eagle Scout rank with his service project for Flight 93 Memorial’s Remember Me Rose Garden.
Ryan was also actively involved with Ride for Kids — the PBTF’s national series of motorcycle fundraising events where pediatric brain tumor patients and survivors are celebrated as the “Stars.”
When our family first attended the Western Pennsylvania Ride for Kids in 2003, we felt like VIPs and quickly learned that motorcycle riders are among the kindest, most generous people on earth. There’s something about seeing motorcyclists dressed in leathers with tears rolling down their cheeks that you’ll never forget. It was nice to see that we were not alone, and to share information and resources with other Star families.
Ryan loved everything about Ride for Kids and looked forward to it for many more years. He enjoyed being onstage during the Star Celebration ceremony and thanking the riders for their generosity and participation. He cherished the gifts from his motorcycle escorts, smiles and high fives exchanged on the red-carpet, the roar of the bikes and the beauty of the motorcycle ride.
But mostly, Ryan loved the people. One especially memorable year, the winner of a mini-moto motorcycle quickly turned around and gifted it to Ryan to keep. The emotional connection created between supporters and Stars like Ryan at Ride for Kids is unlike any other.
As a young adult, Ryan became an active fundraiser and representative at dealership events. We spruced up and donated that same mini-moto motorcycle one year, and it was won by an adult Star for their kids to enjoy like Ryan had. That year would sadly be Ryan’s final Ride for Kids.
In 2015, 20 years after his first diagnosis, an annual MRI revealed a new tumor. It was a diffuse intrinsic pontine glioma (DIPG), a highly aggressive brain tumor that defies treatment. Chemotherapy could only help prolong Ryan’s life until April 22, 2017.
Ryan lived a full life and was blessed with an incredible memory — it’s as if he crammed 85 years’ worth of memories into 22 years, and he remembered every detail. He loved his family, friends and people in general — making everyone he knew feel like they were best friends. He accomplished more than most of us could dare imagine and continues to inspire us daily to #BeKindLikeRyan with his light, humor, encouragement and service of others.
Now, I fundraise and serve as a volunteer task force leader for the Western Pennsylvania Ride for Kids in honor of Ryan’s memory. I serve so I can help other kids and families with their battle, and to look forward to that day when a cure is finally found.
I tell families that, to the best of our ability, we will come alongside them in their struggle. I share the PBTF’s family support resources with them because I know firsthand that a pediatric brain tumor devastates the entire family. Life changes completely from the moment of diagnosis and is never the same again. There’s a new language to learn, doctor visits, hospital stays, treatments, and physical, emotional and cognitive consequences.
Parents are stressed beyond their limits. Siblings are often placed second while wrestling with their own fears. Feelings of confusion, frustration and helplessness abound. Many families “live their lives between MRIs.” And far too often, there is the loss of a loved one such as Ryan who can never be replaced — which is why we need to do everything in our power to cure the kids.
Join Bill and the PBTF as we work together toward a cure for the deadliest childhood cancer. Donate in Ryan’s memory today to give children and teens with brain tumors a brighter future.
Starlights: Shining a Light on Kids’ Brain Tumor Journeys
About the Pediatric Brain Tumor Foundation
Every day, 13 children and teens are diagnosed with a brain tumor, the deadliest and most common form of cancer in kids under 15. Every day after, they are in a fight for their life. It’s a fight the Pediatric Brain Tumor Foundation is here to help families win. A leader in the brain tumor and childhood cancer communities, PBTF’s mission of Care. Cure. Thrive. reflects its commitment to curing all pediatric brain tumors and transforming how children and their families are cared for. Since 1991, PBTF has provided strategic leadership and funding to accelerate the number of targeted therapies for children battling brain tumors today, while equipping families with the patient family education, financial relief, and emotional support they need to navigate their child’s journey. A world without childhood brain tumors is possible when we stand together to effect real, meaningful change. Learn more at www.curethekids.org.