William Herschel Johnson (named after his great-grandpops) was born on Sunday, August 1st and in the 23 days he was with us, he changed our hearts and our lives forever. While we could never have enough time with him, Kyle and I are so grateful for the time that we did share together. In those 23 days, we sang more songs to him then he probably wanted to listen to, read all of our favorite kid’s books and then graduated to the Judy Blume Fudge books, and lived for the moments where he would open his eyes acknowledging he was taking in all of our love.
On Friday, August 20, we met with Liam’s team of doctors and received his diagnosis of Early Infantile Epileptic Encephalopathy. We learned that he would not recover and our days were limited. We prayed that he would dictate when he was ready and are so thankful that he was able to pass peacefully in our arms as we sang to him and told him how much everyone loved him. Liam, true to his name, has moved on from his role as a little warrior to the protector of our family. He has left his footprints on all of us and will forever be our guardian angel.
We may never understand why this happened to us, but we do know that we are stronger because of this, that each day is a gift, and that we have a new sense of purpose – to help the incredible staff at CHOP. Thank you for helping us make this possible.
Each donation will go to the the ENGIN team at CHOP. This team gave us so much comfort while we were there because we know that we did everything possible for Liam. The Epilepsy Neurogenetics Initiative (ENGIN) is committed to providing comprehensive and individualized care for children with epilepsy. They are leaders in the field of epilepsy genetics and offer every child seen unparalleled access to diagnostic genetic testing, an individualized treatment plan, and enrollment in their innovative research studies.