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Down syndrome, leukemia, and the princess helping her family find joy

"She's the bright shining light of our family and our world. She brightens everything up for everyone that she comes across and that she touches."

KELLER, Texas — The Nees family in Keller has had more than its fair share of challenges. So why in that same house can you find so much laughter and so much joy?

Because they also have Emme.

"We didn't know before," said Vicki Nees. "We found out at birth that she had Down Syndrome."

Nees admits that in the years that have followed, Emme has filled their family with happiness, spontaneity and laughter. But then, at the age of 7, Emme was diagnosed with leukemia.

"It was quite a slap in the face," Emme's mom said. "There was a thing where we already have to deal with this, come on, give me a break. And honestly, there's still that feeling. That would be lying if I said we didn't feel like that."

But, she beat it. Emme was in remission. Until four years later when the leukemia came back.

"With cancer, it's really buckle up because it's a hell of a ride," Nees said.

"I remember saying, 'Why, why me? Why, God, is this happening to us?'" said Emme's dad Garrett Nees. "And today it's like, 'Thank you, oh my God,' it's like I cannot imagine my life without Emme."

Because Emme is a gift.

Credit: WFAA
Emme Nees' stuffed animal

Her nickname is Fizzle. "Fizzle is Princess" is the Facebook page that tells her story.

"You are the princess," Vicki said to Emme as they sat on their living room couch.

"I'm a baby," Emme responded.

"You're not a baby," her mom laughed.

"Baby sister," Emme said.

"OK," Vicki laughed, admitting that Emme, the second of her three kids, was actually correct.

With each chapter in Emme's journey, there seems to be a Fizzle-inspired lesson along the way.

"She's the bright shining light of our family and our world," Garrett said. "She brightens everything up for everyone that she comes across and that she touches."

Credit: WFAA
Emme is a cheerleader

Fizzle is a cheerleader at her middle school and for her family and for all those doctors and nurses she's befriended at Cook Children's Hospital.

"Even in some of our worst times in the hospital, you know we could walk into her bedroom and she's singing to all the nurses," Garrett said.

"Yeah," Emme responded seated next to him.

"Usually there's a crowd around her dancing or singing," Nees said, "No matter what situation she's going through."

"You have to choose joy," Vicki said. "I think it's difficult to not have joy when you are dealing with a hot mess like our little Fizzle," she laughed.

Fizzle, by the way, is in remission again. And on the Fizzle is a Princess Facebook page, Vicki celebrated that chapter in her story on the day the last port for medication and chemo infusion was removed from her body.

Waiting that day at Cook Children's Hospital at an outdoor patio where she'd often waited during Emme's surgical procedures, Vicki wrote about it. Emme's story offered another verse or two of joy.

"I'm not naive enough to think I will never sit here again, Emme's life doesn't work that way," she wrote. "However, today we celebrate. I look out the window to the world and I see a blue sky and sunshine that we will be able to enjoy in a few short hours."

"Emme turned our world upside down in ways that we never could have expected," Vicki told me. "Ways that have made us a better person, better people. It makes me feel like a few good things have come out of this horrible stuff."  

Still, this is a family that will ask you to join the cancer fight. Emme has lost too many friends along the way. Pediatric cancer still gets a tiny fraction of the federal research money these children need.

But as for Emme, they will tell you don't feel sorry their Fizzle. As she broke into a cheerleading routine in the family living room, she showed again she is too busy teaching us how to find joy.

"Our world has opened up like I never thought it could," Vicki said. 

"She's just a perfect addition to our family and we can't imagine being without her."

Because Fizzle is a princess. And that's what princesses do.

Credit: WFAA
Emme Nees

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