There are pivot days.
Days that change your life. Some days you mourn. Some days you celebrate. Of course, March 10th, 2016 is the day we began this journey. Two years ago today. Another pivot date is February 28th, 2017. That is the day we launched the Firefly Fund. That is the day we officially started to fight back.
Today, on the anniversary of Belle’s diagnoses, we reaffirm the mission of Firefly. As long as there is breath in our bodies, Pam and I will fight to end this disease. Nothing. Absolutely nothing will stop us. We will not rely on hope. We will not count on miracles. We will do it. It is that simple.
We will do it.
There is one thing that frustrates me. When I tell people our story and tell them about the mission of Firefly…I can see it in their eyes. They certainly have sympathy. That is appreciated. They pray for us. We like that. But they don’t believe that we can cure this disease. Why should they? Chances are they have never seen anyone cure a disease. I wish they could feel what I feel. I wish they can know what I know. I wish they could see the world through my eyes.
The truth is we have multiple potential treatments on the horizon. We have brilliant minds working on this disease. We have dedicated parents, from all over the country, willing to do whatever it takes to save their children. We are funding and doing work that will cure this disease. One or all, or some combination the things we are funding could end this disease, minimally making it a chronic disease. It is not hope. It is not wishful thinking. It is real. It is not someday.
It is now.
The hardest challenge is just beginning. The only way our mission will be accomplished is if we can continue to fund it. We, all of us, our tribe, must do whatever we can do. There can be no half-efforts. It’s time to go “all in.”
Pam and I have a dream. Someday a child will be born. A doctor will walk into the hospital room to address two new parents. Then, for the first time in history, he will say, “ This might be upsetting but it will be alright. Because of newborn screening, we have discovered that your child has a rare disease called Niemann-Pick Type C1. But don’t worry, We have a cure.“ That’s the day that we are fighting for. That is the day that we can say, “We have won.” That is the day our mission is complete. Wherever the hospital room is, we will take planes, trains, and automobiles to get to that child. We will walk into that hospital room, we will hug the parents, we will pick up that child, and kiss him or her on their innocent head. We are fighting for that child, and the many that will come after.