One small voice
If you ask a child “What would you like to be one day?” You might expect them to answer with anything other then “An adult.” But that’s the reality of 1 in every 285 children who will be diagnosed with cancer before their 20th birthday (ACCO.org stats)
Will you help us, village?
It seems rare and far removed, until it isn’t.
Have I ever shared that one of my best childhood friends, whom I grew up with throughout middle and high school AND roomed with for a year at Virginia Tech had a son who lost his battle with Stage IV Neuroblastoma few years before Charlotte was diagnosed with the same disease? In fact, one of the reasons I went into a physical state of shock when Charlotte’s official diagnosis returned was because I knew that word, Neuroblastoma. I knew what it was because I watched Trevor fight Neuroblastoma through his own carepage that his family would update. And I knew he fought so hard but gained his angel wings anyway. I literally hit the floor in shock and anguish when the doctors told us because in that split second I wondered if Charlotte could have a chance at a different outcome then Trevor. Turns out she did because of kids like Trevor who participated in cancer trials so researchers could further their work at better treatment and outcomes. He went through what I can’t imagine to help doctors find a way to heal him, and if not him, then other kid’s like Charlotte. His journey paved her way. And as you all know, Charlotte herself has participated in several trials over the years aimed at helping to learn better ways to treat cancer in children. But there simply still isn’t enough funding for the necessary research to help implement better and more tailored treatment options for little bodies. Trevor’s little body went through treatment with medication developed for adults. The treatments themselves eventually became too much for his little body and he had to stop his fight. They just didn’t have as many options just a decade ago. But that is changing and we could use the NCI/federal governments help in allocating the appropriate funding for this work to broaden for many very underserved pediatric cancers.
And did you know, my mom’s husband has a granddaughter fighting Leukemia? This is their second grandchild fighting cancer in 5 years.
Also, there is a little boy, 10 year old Vince, who lives just down the street from us in our neighborhood who is also battling pediatric cancer.
An elementary teacher who use to teach at our elementary school has a son, Luke, who was also diagnosed with stage IV Neuroblastoma. They still live in our town of Apex and we have met them from time to time while up in NYC for treatment.
It seems rare and far removed until it isn’t.
The odds are it won’t be your child, or grandchild, or niece, or nephew, or neighbor, or the best friend of one of your children. But it might. We too lived a life once upon a time where none of our children had been touched by this disease. We participated in St Baldricks and donated when we could. We cared. But it wasn’t until we were thrust into this world that the reality of how little funding is given that struck me as incomprehensible. No, we cannot live paralyzed in some fear that harm could come to those we love. But we can create opportunities to help and serve the ones who need our help to grow up.
The truth is, pediatric cancer is the number 1 cause of death by disease in children. More then any other disease and the federal government allocates just 4% of it’s annual cancer research funding to pediatric cancer. 4%. There is no one who would argue that our children aren’t worth more then 4%, that there are a group of patients here that deserve to have a better chance at living out their lives. And yet our community of advocates have been begging for an increase in funding for so long with no success. Somehow, despite the limited funding relying more on crowd sourcing, pediatric cancer research IS succeeding. Imagine what could be achieved if they had more financial support.
So here is Lilly—a hero who wants to be heard on Capitol Hill. I don’t know if signing her petition will help make a change, but I won’t be the one to tell her it won’t. In fact, if by signing, it helps raise her voice a little louder then I’m all in. Won’t you help us? Could this be a step in making a difference to our littlest heros out there just trying to fight their hardest.
Here is Lilly’s petition she and her mom have filed with the White House. Thank you for signing with the hope that this will raise her little voice up a little louder:
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