By Sara Moore
My name is Sara Moore, I am mourning my oldest son Charlie.
Charlie died of Diffuse Midline Glioma, a rare, inoperable brain tumor, on August 31, 2018 at 11 years old. I am writing to you today, thanks to the immeasurable love of Jacob’s Heart and their selfless acts of compassion during the most traumatic year of our family’s life.
I received a phone call last September from their founder, Lori Butterworth, the day after Charlie came home from a whirlwind week in the Pediatric ICU at Stanford. I remember standing on the cliffs above the beach when Lori reached out. An honest conversation and a simple invitation became one of the most meaningful relationships I’ve had in 40 years.
Each individual at Jacob’s Heart has changed me for the better from the Board members who also work in the cancer ward, the volunteers who paint brown bags for the grocery deliveries we get on Thursdays, or the ladies who send thank you cards for those of us who can’t find the energy, has changed me for the better. We have laughed, cried, anguished and celebrated together.
The Jacob’s Heart family has accompanied us to appointments at Lucile Packard Children’s Hospital Stanford, hosted and attended our kids’ birthday parties, paid our bills for us, and gave us the priceless gift of time together at their annual family weekend Camp Heart & Hands. It makes all the difference in the world if you have the support of Jacob’s Heart.
When some of the most amazing Pediatric Neuro Oncologists in the country tell you to create memories with your dying child, it makes all the difference in the world if you have the heartfelt friendship, experience and financial, emotional and psychological support of a unique organization such as Jacob’s Heart.
In our dreams they wouldn’t exist, in our shattered reality they are vital to the survival of kids, siblings, parents, grandparents, relatives and friends who are literally doing their best to endure the unfathomable.
Jacob’s Heart deserves every honor and accolade for 20 years of making the surreal details manageable, the hardest moments somehow happy, assuring us that, despite the lack of national funding for pediatric cancer, someone cares.