When my son was twelve, I remember asking him to sweep the leaves off the back porch. Deep inside he was a soldier, a leader, a warrior, and so he grabbed the broom, and in typical Christopher fashion marched outside with purpose and determination. As I peeled potatoes, I watched him from the kitchen window giving the leaves his commands and sweeping them into a pile. I marveled at how quickly he was growing up, and I saw a man inside this childhood frame full of life, ready to conquer the world and become the hero he dreamed of being.

When my son turned 15, all of his dreams were shattered when he was diagnosed with pediatric idiopathic pulmonary hypertension (IPH), a fatal heart-lung disease that affects fewer than 3 children in a million. He had been walking across a parking lot and becoming lightheaded, he nearly fainted. The next day we took him to the pediatrician and thinking he just needed new asthma medication, we were shocked beyond words when he was diagnosed with IPH. This day marked the beginning of a long and painful journey he, and our family, would take, as we all struggled with his diagnosis. In May of 2013 he passed away and a new journey for those left behind was about to begin. Two days after his 21st birthday, my son chose to take his own life. I know in his mind this was the only way he could imagine defeating a disease that had already robbed him of his childhood dreams and the physical health he felt he needed to live a meaningful life.

As a mother, this is almost impossible to swallow. There isn’t a day that goes by that I don’t long for one more moment with my son, one more conversation, or one more outing to buy him a hamburger. It is deeply painful for me to imagine the difficult choice he faced and heartbreaking that I was powerless to save him. As a scientist, it is agonizing to know that the disease that stole a full and rewarding life from my son is really just a complicated biological and biochemical puzzle that no one has yet solved. I know that with the right information, in the right hands, at the right time, with the right resources, diseases like IPH, can be conquered so that children like my son do not have to face the hopeless future he faced.

With this in mind, I am determined to help the next generation of young scientists and young medical doctors learn how to solve complex problems like curing rare childhood diseases. I have worked for the past 20 years piecing together, one book at a time, a science curriculum that I think will enable kids from all backgrounds to learn, understand, and use the tools of science to solve the complex puzzles that affect all of us. For the past 10 years I have also built a publishing company that can support kids and their dreams of becoming tomorrow’s science and medical heroes. Now it is time to take all that we, at Real Science-4-Kids, have created and built and give it back in an effort to cure pediatric IPH and support families who suffer from this and other rare childhood diseases.

Thank you for joining me in this effort.

Rebecca W. Keller, PhD