Our story opens the same as it has for decades for millions upon millions of parents, the excitement of the birth of a new life. All your time and energy and thoughts surround the preparation for the birth of the little one who will join you and forever change you.
Our lives were changed forever when we were told our daughter, Billie McKenna, had a rare genetic disorder named 1p36 Deletion Syndrome (1p36). We experienced the fear of the unknown for us as well as our family, but clung to the knowledge that we loved Billie and that we were to learn everything we could in order to give her all that was needed to afford her every chance of success.
We learned that 1p36 is a genetic condition in which a small amount of genetic material is missing at the tip of the small arm of chromosome 1. 1p36 causes birth defects, minor changes in physical appearance, and intellectual disabilities of varying degrees. We also learned that all children with 1p36 are unique; however, they share many common characteristics. Billie was challenged with low muscle tone, growth/feeding problems, developmental delays, cardiomyopathy and seizure disorders.
Armed with this information and understanding Billie’s opponent we forged ahead. Hope mounted and success followed success. Billie McKenna stopped using her feeding tube two months after coming home from the Neo-natal Intensive Care Unit. She was able to learn to eat and drink by mouth and was able to hold her bottle and spoon. Billie began making personal connections with us, openly laughing when tickled, chuckling at her big sister’s silliness and focused and listened intently as we each read her storybooks and turned the pages. She also began making connections with her toys, which opened up a new world to her. A world of simple and unencumbered joy. Her relationship with her toys offered her the simple joy of playing, exploration and the self-confidence and self-satisfaction that come with problem solving and mastery. In other words, they became more than toys to her. They were equals, a lifeline to another world. They were encouragement and discouragement all rolled into one. They were hope. And they were hers. Billie sat, stood and walked with gentle assistance with the help of her toys. These things might not sound like much, but for a child with 1p36 these are Mount Everest and marathons. And with the help of her Physical/Occupation therapist, her own desire to work hard and our unwavering love and support we dared to hope for a future, a future with Billie and her day to day successes.
Our hope turned to fear when Billie started having seizures in the spring of 2015. Now we lived in a world of fright, the unknown and heartbreak every time she experienced them. Once again armed with our unfailing love for her we charted a course to give her everything needed and every opportunity to live in a world seizure free. But sadly, neither she nor us got to experience that world.
November 21, 2015 nine days before Billie McKenna would turn two, our spirits and hearts were broken when she suddenly passed away. In our search for meaning, we always came back to one clear and familiar point, Billie McKenna. So with Billie inspiring us and leading the way, this foundation was started to honor her. And although she left us too soon, she showed us the need to help others especially families like our own.
Don’t cry because it’s over, smile because it happened.