On February 2, 2016 Charlie was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma), which is an inoperable, aggressive tumor in the brainstem for which there is no cure and only experimental treatments to buy time. Charlie passed away on August 6, 2018, at 17 years old.
Charlie had a quiet strength about him. He never complained about his situation and always tried to be positive. He loved every minute of this life and world. He will always be with us who had the privilege of knowing him, loving him and being loved by him. He would want nothing more than for the rest of us to appreciate the life we have. To stop, look around, and feel the wonder surrounding us, and cherish the connections with those in our lives. We know Charlie would want everyone to look back with happiness and to celebrate his life instead of mourn his passing. On behalf of Charlie please take a moment to stop and smell the roses today.
Charlie took a very active role in his medical care, attending DIPG research conferences and participating in several clinical trials. Charlie was an advocate for kids with pediatric cancer and felt the need for improved peer support, actively reaching out to other teens and adults within the DIPG community. He participated in developing programs in our community to support and connect cancer families. Charlie unselfishly donated his brain for DIPG Research to the Monje Lab at Stanford University. Charlie was a communicant of St. Ann’s Church and served as an Altar Server and Sacristan.
Charlie wanted to speak out for all children with cancer, so that they have a chance to grow up. When he found out that less than 4% of federal funding for cancer research goes to children, he went to the CureFest rally in Washington DC to be a voice for those children who cannot speak up for themselves.
Thank you for helping to change the outcome by donating to research.