They never came straight out and told her, but to this day, Keith and Brooke Desserich are devastated at the thought, that their little girl may have figured out that she didn’t have much time left on this earth.
During the months of treatment for the brain tumor that would ultimately claim her life, six-year-old Elena would watch as her father jotted down notes for her little sister Grace, about her and her little sister’s lives together.
Grace was only three-years-old at the time of her diagnosis, and he knew she would be too young to remember the times she spent with her older sister. But he didn’t know it would inspire Elena to write something for him.
Elena showed no signs of illness until late 2006, just before her sixth birthday. When they noticed she was slurring her words and having difficulties walking, she was taken to her pediatrician, who immediately requested an MRI.
Keith remembered when the doctor entered the room where he and his wife were waiting, and she was crying.
“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,” Keith recalled.
Young Elena was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an incurable childhood brain tumor. The doctors estimated she had less than five months to live, but incredibly, she defied those odds and lived for nine.
But it’s what she did during those final months, that’s as beautiful as it is heartbreaking.
She wrote her parents love notes.
The Desserich’s home was undergoing a remodeling around the time of Elena’s diagnosis, and several rooms were filled with piles of boxes and books that had been moved from other areas of the home.
As they filed through the renovated space, her parents started finding notes that she had left behind for them – inside books and boxes, inside their dresser drawers and briefcases, even boxes that contained Christmas ornaments. For two years they discovered her little gifts.
Keith and Brooke believe Elena was emulating Keith’s note-taking of her and Grace’s lives together, knowing that her messages would help them continue their lives.
“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,” Keith said.
In 2008, the year after Elena passed away, the couple founded The Cure Starts Now. The non-profit aims to cure childhood cancer in all its forms by focusing on the types of cancers, like Elena’s, that do not respond to conventional treatments.
“The charity is a responsibility – a calling to do something more,” Keith said.
In the decade since her death, Keith and Brooke have welcomed a third daughter into the family, Nina. They also shared some of Elena’s notes along with their own diary entries in the form of the New York Times best-seller, “Notes Left Behind.”
Proceeds from sales of the book are donated to The Cure Starts Now.
Watch the video below to hear more of Elena’s story, and share to spread the message of this little girl’s determination!