Family of Fairport girl with rare brain disease has new hope

Zoey Daggett, 5, will start a new experimental drug this week for a terminal brain tumor.

Fairport, N.Y. - A Fairport kindergartner who has a rare brain disease and was given a grim prognosis continues to surprise her doctors.

Zoey Daggett is independent, strong-willed and loves playing with her dolls and Legos.

“We play tea parties, play with her Barbies, but it’s basically a lot of Legos,” said Casey Daggett, Zoey’s mom.

The five-year-old was given 9 to 12 months to live because terminal brain tumor called DIPG.

Nearly two years later, "She's happy and she's loving life,” her mom said. “She wants to do things and see things."

So do her parents. But it's been a tough road that included traveling to Germany for treatment to help their child. Some of the treatments worked, while others did not.

Last year, the family came close to losing Zoey just before the holidays.

"That, more than likely, it would be Christmas without Zoey,” Daggett said. "We were told if we didn't do radiation right away, we would have about a week."

Radiation worked, shrinking her tumor close to its original size at diagnosis.

"She's almost fully walking,” Daggett said proudly. “She has no symptoms, no signs, she's a typical five-year-old, and you wouldn't have any idea that something was going on with her."

The Daggetts are also smiling because Zoey’s doctor just cleared her to start on a new drug, designed to kill cancer cells.

"Finally, finally somethings good,” Daggett said. “We don't have to leave the country for something. We can stay here."

The treatment includes a pill once a week for the next four to six weeks. Then, she'll be tested to see how the new drug is working.

“It's scary when you have to stop what you're doing and think it's working,” said her father, Ben Daggett. “But when you see the odds of 50 percent you got to take a shot."

The drug’s effectiveness is 50 percent - which is better than other medications Zoey’s been taking, which her parents say usually have a five percent response rate.

Zoey’s father says they'll try, "Whatever it takes,” to keep his little girl smiling.

Zoey's first treatment is Thursday.

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