My name is Sara Moore, and I’m mourning my oldest son Charlie. He died of Diffuse Midline Glioma, a rare, inoperable brain tumor, on August 31, 2018 at 11 years old.
I am able to write this letter 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 remember standing on the cliffs at the beach after a whirlwind week in the Pediatric ICU when Lori Butterworth reached to me. An honest conversation & a simple invitation became one of the most meaningful relationships I’ve had in 40 years.
Each individual at Jacob’s Heart, from the Board members who also work in the cancer ward, to 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, have all changed me for the better.
We have laughed, cried, anguished and celebrated together. The Jacob’s Heart family has accompanied us to appointments at Stanford, hosted & attended our kids’ birthday parties, paid our bills and gave us the priceless gift of time together at Camp Heart & Hands.
When neuro-oncologists 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 & 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 someone cares.