Local mothers launch foundation to raise awareness, funds for childhood cancer
A local mother has launched a foundation in memory of her 6-year-old son, who tragically passed away last month following a long battle with cancer.
“I knew I needed to keep fighting for all of the other kids that deserved a chance to live,” said Sara Latronica.
Sara’s son, Noah, was just 6 months old when he was diagnosed with ependymoma, a rare brain cancer.
He spent more than 40 nights in the intensive care unit, faced back-to-back brain surgeries, and started chemotherapy treatments.
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“We were told when he was diagnosed that the likelihood of him surviving five years was pretty low,” Latronica said. “Specifically with brain cancer, chemotherapy is notoriously ineffective, and we’re limited to what our options are. None of them are good. There’s such a lack of clinical trials out there for pediatric cancer that everything is a guessing game.”
And so Latronica launched “Noah’s Legacy Foundation” in hopes of raising awareness and funding for research. More information can be found on the foundation’s website here: https://www.facebook.com/noahslegacyfoundation.
Joining her in the launch is close friend Casey Masciantonio. The two mothers met through social media after Masciantonio’s daughter, Emilia, was also diagnosed with brain cancer, a rare type called atypical teratoid rhabdoid tumor.
Emilia’s diagnosis came just after her first birthday. Today, at 3 years old, she’s undergone multiple surgeries and chemotherapy. During a recent checkup, she was found to have “no evidence of disease.”
Still, she has a long road to full recovery, having suffered from paralysis following one surgery and having recently faced brain bleeds.
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“We need the support. We need the allies because right now, our foundation, what we’re advocating for, isn’t going to affect our children. They’ve already shown up to a gun battle with sticks and stones,” Masciantonio said. “We’re doing this for the future of pediatric cancers.”
The moms told Channel 11 that childhood cancer research, awareness and treatments are severely lacking.
According to the National Pediatric Cancer Foundation, more than 40 children are diagnosed with cancer each day in the United States, and it’s the number one cause of death by disease seen among kids. Yet, there aren’t many cancer treatments developed specifically for children, and most that do exist were approved more than 30 years ago.
The NPCF says that due to the toxicity of treatments, two out of every three survivors will develop other chronic conditions. Yet, of the billions of dollars spent by the government on cancer research each year, the NPCF reports that just about 4% of that went toward childhood cancer studies.
“Our children don’t have a chance with that kind of money,” Latronica said. “We are in desperate need of funding for specific drugs for childhood cancer, better options for our kids.”
September is Childhood Cancer Awareness Month. On the final day, Friday, Sept. 30, Noah’s Legacy Foundation is hosting a “Light the Night Gold Pittsburgh” walk. Supporters are asked to meet on the sidewalks of the Andy Warhol Bridge at 7:45 p.m. with their gold, from lights to glow sticks.
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