Edgerton girl's optimism never wavered despite medical issues
EDGERTON—Bella Lentz faced a litany of medical issues in her 10 years of life, snowballing one after the other and leading to specialist after specialist.
Missing ligaments and tendons in her fingers.
A partially functioning esophagus and a nonfunctional kidney.
Hemihypertrophy, which caused a thick tongue and one leg to be larger than the other.
A duplicate 15th chromosome, which caused overgrowth and overeating.
And diffuse intrinsic pontine glioma, a tentacle-like brain tumor encircling the brain stem.
That's more medical complications than most adults face in a lifetime. But Bella's optimism never wavered.
She found bliss through music. Listening to songs on YouTube was her “dance party,” and she insisted on sharing this happiness with others, said her grandma and legal guardian, Dee LaRocco.
“She loved having a dance party, and she made sure every hospice nurse that walked through the door had to have five minutes of a dance party, if not more,” LaRocco said. “No one could get out of this house without a dance party for Bella.”
Bella died Sept. 12 at the age of 10, succumbing to medical issues some doctors predicted would claim her life years earlier. She had just started fifth grade at Community Elementary School in Edgerton.
LaRocco and her husband, Mike Lentz, weren't exactly sure how many specialists had treated Bella. A neurologist, geneticist, urologist—more than a dozen, LaRocco said.
But Bella's joy helped ease the burden. She always was smiling, singing and dancing, and she cried only if someone else was crying, too, LaRocco said.
Her positive outlook and determination might have extended her lifespan.
“We had specialists telling us left, right and center she wasn't going to live. They told her she wasn't going to live until 3. Then they told her she wasn't going to live until 5,” LaRocco said. “Then they started to tell us again when she hit 5, and I said, 'Why waste your time? She's going to fly right past that number.'”
To Bella, LaRocco and Lentz were Granny and Pa. Her birth mother wasn't a part of her life.
But a return to parenting brought plenty of happy memories for the grandparents. One time, a friend of Bella's told LaRocco that Bella was getting bullied at school.
LaRocco confronted Bella, saying bullying was unacceptable and they could do something to fix it. Bella declined and said it was OK.
“She looked at me and said, 'No, Granny, you don't understand.' I said, 'What don't I understand?'” LaRocco said. “She said, 'They just don't know they're my friend yet.' That's her philosophy in life.”
Bella saw everyone as a friend. Her impact on others was something LaRocco and Lentz didn't fully realize until after she died.
At Edgerton High School's homecoming game Sept. 22, the school held an unexpected moment of silence. LaRocco and Lentz were outside at a friend's home near the stadium.
They could hear the murmur of the crowd, followed by extended quiet and cheering. They had no idea what it was for until LaRocco's phone started buzzing, Lentz said.
True to Bella's passion, the family held a dance party for her instead of a regular funeral. More than 400 people attended, LaRocco said.
Now, life is slower. No more doctor appointments. No more specialists.
But the emptiness has just begun.
“We were always doing something. Going somewhere, meeting someone,” LaRocco said. “I have no idea what to do with myself anymore.”