BRANDON, Fla. — A local mother will continue her fight on Capitol Hill. Bonnie Woodworth and her family are heading to D.C. with the 1Voice Foundation on Wednesday morning to advocate for more pediatric cancer research funding.
I went to the Woodworth home earlier in the week and when you look around, you see Tatumn Woodworth.
“She still kind of runs this house somehow,” Bonnie said with a smile.
You can still hear her tiny voice in the old home videos Bonnie recorded.
“Happy birthday! I love you,” Tatumn said as she FaceTimed with her aunt.
The walls in the Woodworth home are filled with her smile, and her stuffed pink bunny, named Bunny, is a source of comfort even now.
“She loved to sing loud and proud, didn’t matter if she knew the words or not, but she was a princess. She wore her little plastic heels around the house. They didn’t always match, but she had them on,” Bonnie said, laughing.
Tatumn was a force. She was a spunky 4-year-old child whose life was cut very short.
“Losing a child is heartbreaking, and it’s very unnatural,” Bonnie said.
Tatumn was diagnosed with DIPG—Diffused Intrinsic Pontine Glioma—a brain tumor with no cure.
Delaney Woodworth, Tatumn’s older sister, remembers the day her dad broke the news.
“My younger sister and brother, they were younger, and I don’t think it fully clicked,” she said. “I remember when I realized it, I just ran to my bedroom and started hyperventilating.”
DIPG is the same type of cancer Neil Armstrong’s daughter had in 1962. At the time, he said, “How can they send me to the moon but not cure my daughter?”
More than 60 years later, the prognosis hasn’t changed.
“We had about five and a half months before she passed away,” said Bonnie.
It’s why, for the last 12 years, Bonnie and her family have been traveling with the 1Voice Foundation to D.C. to push for more funding.
“There’s hundreds of types of pediatric cancers, the NCI‘s budget was about 4%. [Four percent] of that budget went to pediatric cancer, and that had to be spread amongst them all. So you can imagine it was hard to make a difference,” she said.
They’ve been able to get that up to 8%, which she says is good, but it’s not enough.
“When a child dies, it’s a whole lifetime that’s lost. And really, I can’t think of anything more important,” said Bonnie.
Late last year, when the government passed a temporary spending bill to avoid a government shutdown, it scrapped several bills aimed at helping push the needle forward on treatment options and research for families that have children currently battling pediatric cancer.
Bonnie says they will ask lawmakers to reinstate those bills, like a program for pediatric drug development that's already produced 65 new medications and an act that would allow low-income families on Medicaid to cross state lines for treatment.
In the meantime, Delaney has also devoted her life to this cause. She’s a clinical trial research coordinator at the University of Michigan.
“When I am with the families in the hospital, even just being able to say, hey, you know, next week I’m gonna go D.C., and I’m asking for more funding—it’s not much, but it’s something I can offer the families,” she said.
Which is exactly how Tatumn would have handled it.
"In a way, I'm looking up to her, trying to keep up with her,” Delaney said with a smile.
The families and the 1Voice Foundation will be in D.C. from February 26 to 28.
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