Number of Participants: 11
Hours Donated: 1
Value of Time Served: $93
Event Type: Children & Youth
Date: September 2, 2022
Chaminade High School
Jackson Avenue, Mineola
Varsity FLYERS take a few minutes out of this pre-season to support the Mighty Madison Foundation and the fight against DIPG childhood cancer.
Madison Milio was diagnosed with this DIPG cancer and passed away two short years later after a long battle. The cause is spear headed by the parents. Mike and Kristen Milio, as well as friends of the Massapequa area.
GO FLYERS and God Bless all those that support the Milio Family and this cause.
——– Information from https://www.liherald.com/elmont/stories/remembering-mighty-madison-by-raising-funds-for-dipg-research,142694
DIPG, which typically occurs in children, manifests as a rapidly progressing brain tumor in an area of the brain stem that controls the body’s vital functions, such as breathing, blood pressure and heart rate. The cancer attacks the nerves in the brain stem, causing degeneration of those everyday functions.
Although DIPG is incurable, and Madison was initially given nine to 11 months to live in 2019, she went on to live for 32 months, although she spent 15 months in a coma. She underwent 30 rounds of radiation therapy, and also took part in a T-cell clinical trial in Washington, D.C., in August 2019. But just 10 days after receiving 40 million T-cells, she began having trouble breathing, was soon intubated, and underwent a tracheostomy in September 2019.
During a second round of radiation in 2020, Madison lapsed into a coma, and she died last December .
Madison earned the nickname “Mighty Madison” by being so courageous throughout her experience, Kristen explained.
For a long time, she would receive radiation treatment every day at 7 a.m., and then one of her grandfathers would take her to school. “She was so tough, and she never complained,” her mother said. “As long as she could smile, before that was taken away from her, she did.” Kristen stressed that Madison did everything her parents and doctors asked her to — always with a smile.
“She didn’t complain, and she was always happy,” she said, despite the fact that she was never far from a ventilator.
Madison taught many people, including adults, about how to approach life each day, Kristen said.
“She opened so many peoples’ eyes to what’s important in life because of the way she was handling life.” Her mother summed up her philosophy in one sentence: “Don’t sweat the small stuff and make memories when you can.”
Madison, her mother said, used to say that she was famous. Diagnosed in first grade, Madison grew popular among the community of Massapequa, where the Milios live.
With a street named after her in Massapequa and the creation of her own merchandise Madison has indeed become famous, Kristen said.
“She’s impacted many lives, and now we hope to extend that and impact lives and save lives,” Milio said.
Raising awareness about DIPG
Research into DIPG and its treatment does not receive substantial funding.
In fact, according to the Pediatric Cancer Research Foundation, the federal government allocates only four percent of the National Cancer Institute’s annual budget to childhood cancer research, and only a sliver of this is designated to DIPG research.
Despite the low levels of funding into DIPG research and the public consensus that the cancer is rare, Kristen stressed that DIPG impacts hundreds of children each year. “It’s not rare; it’s terrible,” Madison’s mother said.