Editor's Note: This guest post is by Stefani Healey, mother and co-founder of The Brooke Healey Foundation, the nonprofit that was featured in our October 2014 "The Power of Parents" column. Since the organization's start, The Brooke Healey Foundation has raised over $30,000 for research for diffuse intrinsic pontine glioma (DIPG), a rare and inoperable form of brain cancer, in honor of Stefani and Steve Healey's daughter Brooke who passed away from the disease a year ago today, only six days after her 5th birthday.
As the parents of a beautiful, smart, silly 4-year-old girl who was diagnosed with a brain tumor in January 2013, we were shocked. One day Brooke was fine, and the next we were told she might have eight months to live. Getting through those eight months was torture, and so special at the same time. During Brooke's brave fight against DIPG, she never complained and continued to bring smiles to everyone with her larger-than-life personality. We believed Brooke could be cured, even with the odds that we were given, but we also could see the reality facing us as she began to decline. Watching her suffer was, and still is, the most painful thing I've ever experienced. But spending just about every moment with her during that time was also so special. The hugs and kisses. Looking at her face, and into her eyes. Holding her hand. And snuggling whenever possible.
As soon as Brooke was diagnosed, our community was incredibly supportive. We were overwhelmed by donations, gifts, dinners, and events in Brooke's name. Her battle inspired people from all over the world who came together in support of Brooke, our family, and each other. The support from kids as young as 5 was particularly touching. Many children donated their birthday money or had lemonade stands to raise money for Brooke. Athletic teams wore socks that read "Brooke," high school wrestlers wrote her name on their headgear, and the New York Jets had a jersey printed with her name on it. One day, we opened the door, and our local high school football team was standing in our front yard to give us a ball they had all signed. It was these acts of kindness that inspired us to create The Brooke Healey Foundation with three goals in mind: to build awareness and raise funding for DIPG research, to help families affected by pediatric brain cancer, and to award scholarships to civically active high schoolers in the community.
Since Brooke's diagnosis, we have met many families who live through the same struggle we did. There will continue to be many more children who will be diagnosed with a brain tumor. Pediatric brain tumors have a survival rate of less than 20 percent. Research in this area is greatly underfunded. There have to be more advancements made to find a cure, and doctors and researchers need funding to be able to find that cure. The children diagnosed, their parents, and siblings need support. By raising awareness we can raise funds. Rallying around a sick kid is the right thing to do, but sticking around and continuing that fight after they are no longer here is the more difficult part. It is our goal to continue to keep others aware.
You can read more about our journey—from diagnosis to what we are doing now as a foundation—on our website, www.brookehealey.com.
Photo: Brooke Healey courtesy of Meaghan Doughtery Photography