When Mina Carroll put her daughter Philomena Stendardo on a bike for the first time, she said the most difficult thing to teach her wasn’t how to pedal. It was how to stop.
“She’s pint-sized, but a firecracker,” Carroll said. “She was everything I could want in a daughter and more.”
Eight-year-old Philomena died in July 2017 from diffuse intrinsic pontine glioma (DIPG), a cancer of the brain stem with a zero percent survival rate. But a month after their daughter’s death, Carroll and her husband Mark Stendardo formed the nonprofit Storm the Heavens, which aims to raise awareness and funds for DIPG research.
On March 15, Storm the Heavens held its first annual Bean’s Ball — after Philomena’s nickname, “Bean” — at Vie on North Broad Street, raising an estimated $175,000 for DIPG research at the Children’s Cancer Therapy Development Institute.With Storm the Heavens, Carroll hopes to eradicate DIPG’s zero percent survival rate — a “criminal” figure, she said.
“I really do believe with all my heart that we are at the beginning of the end of the zero percent survival that comes with DIPG,” she said.
DIPG is caused by tumors on the brain stem, which controls critical life functions like breathing and blood pressure. According to the Dana-Farber Cancer Institute at Boston Children’s Hospital, about 300 children between the ages of 5 to 9 are diagnosed with DIPG every year, and a patient lives for a median amount of nine months after diagnosis.
Philomena's rare disease attracted support and attention from across Philadelphia. The family used the #StormTheHeavens hashtag to ask neighbors to pray for their daughter.
About 700 people attended a prayer group for Philomena atSt. George Parish and Mother of Divine Grace Parish in Port Richmond, just three days after she was diagnosed.
Last September, more than 3,000 people attended a Port Richmond block party, which was organized less than five days prior, to celebrate her, and about 5,000 people attended the 8-year-old’s viewing at St. Anne’s Parish in Fishtown. She even visited Pope Francis in September 2016 through the Make-A-Wish Foundation, receiving his blessings in person.
But even those blessings could not prevent her from ultimately dying from DIPG on July 23, 2017.
DIPG can cause progressive and uncomfortable symptoms like limb weakness, frequent nausea and vomiting, as well as impaired sight and hearing. As Philomena dealt with her symptoms, Carroll said her daughter never complained. She always had a smile on — during treatment, at soccer games she continued to play after her diagnosis, and on the family trip to Rome to meet the pope in 2016.
“Wherever she would go, she would be the kid that no one would forget,” Carroll said. “She made an impact on everyone everywhere she met. She really truly was just one of a kind."
Carroll has even received messages from strangers who said Philomena’s story changed their lives.
"I’ll be married 29 years in October, but if not for your precious daughter I probably wouldn’t be celebrating those 29 years,” a testimonial posted anonymously on Storm the Heavens' website reads. “When social media blew up with prayers for Phil and the pictures of that beautiful girl went viral...[my husband and I] started praying together for Phil. ... I will never ever forget Philomena or what she did for me and my family.”
Storming the Heavens
About 600 people attended the event, including politicians like Councilman Mark Squilla, Pa. Rep. John Taylor and Pa. Gov. Tom Wolf. Wolf visited Philomena and her family in their Port Richmond home last summer.
Carroll said Storm the Heavens also hosts weekly community rosaries that alternate between St. George and Mother of Divine Grace. They are planning other fundraising events like a 5K race in the fall, and another Bean’s Ball next year.
For more information, visit stormtheheavens.org.