Judging by the happy smile on her face, you would probably guess that 6-year-old Elena Desserich had no idea that she was suffering from a rare and incurable brain cancer called Diffuse Intrinsic Pontine Glioma (DIPG).
However, deep down she may have.
Elena’s parents never told her that doctors said she had only five months to live, however, one thing her parents are sure of is that she must have somehow known they would need support and consoling after she was gone.
“Elena was wise beyond her years,” her father Keith Desserich told Mail Online. “She would go out of her way to help younger children, even reaching out to adults when she felt they needed her comforting.”
After Elena’s death, her parents began finding hundreds of love notes that she left for them and her sister Grace between the pages of books, in drawers, and other hiding places.
The notes read “I love you Mom, Dad and Grace” and “Sorry, I’m sick” or “Grace, Go, Go.”
Even a decade after her death, Keith and Brooke Desserich say they still find the notes their daughter left for them. The family found out Elena was sick when they were remodeling their Cincinnati home.
Everything they had was stacked in boxes into three rooms, but the project was put to on hold during Elena’s treatment.
“After she lost her battle, slowly we started to put our lives and our house together,” Keith explained. “We found the first few notes and thought we’d forgotten about them.”
They began finding more and more notes and Elena’s grandmother even called to say she found one in a dresser at her home.
They finally realized that Elena purposely left the messages for her family so they could find the strength to continue in life after she was gone.
“We believe Elena was doing for us what we were doing for Grace,” Keith says. “At times, she would see me writing and I would explain that I was writing notes to Grace to tell her about the two of them. We believe that Elena was simply doing this for us.”
Now the family has Elena’s notes on display in their homes and also carries them on them at all times.
“It was her way of letting us know that everything would be OK,” Brooke said. “It feels like a hug every time we open one.”
Elena’s parents even both carry around one that is unopened in their briefcases.
“We don’t ever want to find the last note,” Keith told Mail Online. “I hope we keep on finding them for years to come.”
“It’s our way of saving the last note,” Brooke added.
Since Elena’s death, the family started a foundation called The Cure Starts Now which aims to eliminate cancer.
Eventually, the family published some of the notes in a book titled “Notes Left Behind,” a book originally intended for Grace, whose proceeds go toward funding The Cure Starts Now.
Since The Cure Starts Now was founded, they have raised more than $6.8 million for cancer research.
You can learn more about the organization and make a donation at thecurestartsnow.org.
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