Casey and Ben Daggett wanted to do their best to comfort their daughter, Zoey, 5, in the final hours of her life after nearly two years of treatment for a rare type of brain tumor.
While Zoey’s eyes were closed as they held their only child in the family’s home in Fairport, New York, they knew she could still hear them.
They fought through tears to tell her how much they loved her, while her favorite movie, “Harry Potter and the Prisoner of Azkaban,” played on the television in the background.
A photo of the heart-wrenching scene was taken by their home nurse at 11:30 a.m. on the Fourth of July, and Zoey died at 4:17 p.m. The couple posted the emotional picture on a Facebook page that had been updating people about Zoey’s condition.
“I thought it was a beautiful thing,” Casey Daggett told TODAY. “You can see our emotions. It just warmed me because that picture showed the love we had for her.”
Zoey was diagnosed in July 2016 with diffuse intrinsic pontine glioma (DIPG), a rare tumor in the brain stem and spinal cord.
Ben, 35, and Casey, 34, noticed something was wrong when she had trouble getting up after falling in the park while playing with a friend. Six days later, she had no use of her left hand, resulting in a trip to the emergency room, where doctors found the tumor.
The couple had been taking her to bi-weekly appointments at a local clinic before it was determined in the last month that nothing more could be done for her because radiation treatments had been ineffective.
They kept her at home, where family and friends visited and comforted her, reading her favorite books to keep her happy.
On the day she died, Casey and Ben played all her favorite movies for her, like “Frozen,” “Moana” and “Ghostbusters,” while also playing comforting music.
“She was just such a charismatic, loving child,” Casey said. “Even towards the end she wanted to go say hi to everybody. She loved being around people and just spreading love wherever she went.”
The photo was reminiscent of one posted by an Arkansas family of their 6-year-old son consoling his little sister two hours before she died from DIPG last month.
The Daggetts have a permanent reminder of their little girl in the form of matching tattoos of soundwaves of Zoey’s voice on their arms. The soundwaves represent the words “I love you” and “Not today.”
The latter is a line from “Game of Thrones,” which says, “What do you say to the god of death? You say, ‘Not today.'”
“Ours are all different colors because she loved every single color possible,” Casey said.
They got the tattoos in June 2017 when Zoey had come very close to dying.
“She thought (the tattoos) were very cool,” Casey said. “She loved those fake stick-on tattoos, and she thought it was really neat.”
The outpouring of support from those who have seen their photo has helped Ben and Casey endure Zoey’s loss. They are also hoping it can raise more awareness and funding for DIPG.
“It’s been a great feeling to show how much we love Zoey,” Casey said. “Even the raw emotion of it all, it’s spreading beauty and love.”
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