Elena was just five when her family received the news that would change their lives forever.
The first signs came just two days before her devastating diagnosis, when the Ohio girl began to slur her words and walk with slight difficulty.
Thinking their daughter had strep throat, parents Keith and Brooke Desserich went to the emergency room only to be turned away with the news their Elena was well. A second opinion from a paediatrician resulted in an MRI, which led to the words every parent dreads.
“A doctor entered her room crying,” dad Keith recalled to The Mirror.
“Not fully understanding, we offered our condolences, only to have her tell us she was crying because of the news she was about to deliver.”
They were told their little girl had a Diffuse Intrinsic Pontine Glioma (DIPG) – a rare childhood brain tumour for which there is not yet a cure.
Though she was given less than five months to live, Elena managed to stay with her family for nine months, right up until the moment she passed away peacefully in her bed.
In the two years that followed her death, Keith, Brooke and their youngest daughter Grace began finding notes stashed within boxes and drawers.
“After she lost her battle, slowly we started to put our lives and our house together. We found the first few notes and thought we’d forgotten about them,” Keith tells the publication.
“Only after discovering many notes, and receiving a call from my mother, telling us she’d found a note in Elena’s dresser at her house, did we finally understand what Elena intended.”
Pushing through partial paralysis, Elena had embarked upon a remarkable project in the last months of her life. She carefully made hundreds of letters and drawings with messages that read “I’m sorry I’m sick” and “I love you Mom, Dad and Grace”, and hidden them throughout their house.
“We believe that Elena was simply doing this for us,” says Keith, with Brooke adding in a previous interview with Today: “It was her way of letting us know that everything would be OK.”
After demand came from family, friends and kind strangers, the Desserichs decided to publish some of their daughter’s notes in a book entitled Notes Left Behind.
Elena’s story went on to touch the world, and it wasn’t long before her inspiring tale quickly became a New York Times bestseller with all proceeds going to the charity The Cure Starts Now – which her parents began in the hopes to cure all cancers “one child at a time”.
Today, the couple’s daughter Grace is 14. Elena would have been 16. Keith and Brooke welcomed another daughter, Nina, three years ago, and couldn’t be more thankful for their daughter’s notes, which continue to carry her spirit and strength.
“She is still very much a part of our family, with her picture and her drawings still hanging on our walls and through the stories that Elena invented for Grace that we now read to Nina.”
To find out more, or to donate to The Cure Starts Now, click here.
Elena’s story will be told for years and years to come.
