The inaugural Race for Change in 2018 raised $35,000 for pediatric cancer research. (Photo courtesy Anne Abbott)
Cooper Abbott was just 2 when he was diagnosed with a sarcoma, an uncommon cancer.
He responded well to treatment, but then, at age 6, came another cancer diagnosis, a brain tumor.
His family was confused; was this a recurrence of the first cancer? “[The] odds of that happening to a child are super rare,” says his mother, Anne Abbott. Testing ensued. It was no recurrence.
Further testing indicated that Cooper had a rare condition, Li-Fraumeni syndrome, a genetic disorder associated with two tumor-suppression genes, CHEK2 and TP53. It places children and young adults at greater risk for developing multiple cancers, beginning in childhood. An inherited mutation in TP53 is found in more than half of all families with the syndrome. Mutations may allow cells to “divide in an uncontrolled way,” resulting in tumors.
Its prevalence is unknown, though a registry cited in the National Library of Medicine noted there were 400 people with the condition in the United States, representing 64 families. The Li-Fraumeni Association reports that people with the syndrome have a 90% chance of developing a cancer by age 60 and a 50% chance by age 40. Women with the syndrome have a significantly higher risk of breast cancer, and a near 100% risk of developing any cancer. There is no treatment for the syndrome itself, and there is no cure.
Cooper again beat cancer, but then he faced another battle, leukemia, which had nothing to do with the syndrome but instead stemmed from the radiation and chemo treatments he had received for the brain tumor, says his mom.
“That was a rough diagnosis,” she says. Cooper had responded well to the other cancers, staying active, playing baseball and practicing taekwondo, and he was a good student, too, keeping up with his classes and not lagging behind.
“You would never even know that he was ill,” Abbott says.
But this battle proved too much. He was just 9 when he died in November 2017.
Cooper will be honored on Oct. 12 with the Race for Change, a 5K and kids’ fun run fundraiser at Kindred Spirit Brewing in West Creek to benefit pediatric cancer research.
His mother says it is an appropriate way to honor their son. “He [had] done some runs himself to raise money for childhood cancer causes,” Abbott says. “We just knew it was something that he would approve of, something that he would have been a part of.”
Abbott describes the event as “trying to make something good come out of our sad situation.”
It’s the second year for the fundraiser. About 375 people participated last year, and about $35,000 was raised, with all proceeds benefiting the Arms Wide Open Childhood Cancer Foundation to fund a research project at the Children’s National Health System Main Hospital in Washington, D.C., Abbott says.
It was a great turnout, with lots of Cooper’s friends, classmates and family members, she says. “So many nice people came out. It was a neat morning.”
The fundraiser is on a special date, what should have been Cooper’s 11th birthday. The immediate family will be there, including Cooper’s siblings, Benjamin, 2 1/2, and Teddy, 7 months. Benjamin will take part in the kids’ fun run, though his parents, who have participated in similar events as runners in the past, will be a bit busy: The boys’ father, Alex, will be coordinating events, and Anne will be at the registration desk.
“It’s very healing for us,” she says, “to spend the day doing something like this and trying to make a difference, to honor him in this way.”
About Pediatric Cancers
Prevalence: Each year, about 11,060 American children ages newborn to 14 are diagnosed with cancer.
Cause: The National Cancer Institute estimates that about 5% of childhood cancers stem from a genetic mutation that may be passed to children from parents. Otherwise, causes are generally unknown.
Common cancers in children: Lymphomas, brain and central nervous system tumors, and leukemias
The good news: There has been a 65% drop in the cancer fatality rate in children since 1970.
But: More children die of cancer-related illness in the United States than from any other disease, with fatalities in about 11% of those diagnosed with a cancer.
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