In a personal essay published in Queen City Nerve in 2019, Erin Santos reflected on the seven years that had gone by since her daughter, Isabella, passed away from neuroblastoma, a rare cancer affecting the sympathetic nervous system.
“We can never fully recover from the journey she took us on, the last breath she took in front of me or the lessons she taught us,” Santos wrote. “We are thankful that we were a part of the ride she allowed us to be witness to in the 7 years we had with her and promise to take her with us for the next 7 years to come and beyond. We are going to be okay.”
Her words aimed to remind other families who’ve lost children to pediatric cancer that it’s okay to move forward without forgetting.
As founder of the Isabella Santos Foundation (ISF), Santos has been vocal about the grief cycle she’s experienced and how her nonprofit has evolved not only since Isabella’s diagnosis but since her death as well.
June 2022 marked 10 years since Isabella passed away and 15 years since ISF was formed. It also marked a new chapter for Erin Santos, who recently wed Blair Primis, known in many circles around Charlotte for his large role in supporting local media as the former senior vice president of marketing and talent management at OrthoCarolina. The couple went on their honeymoon in early September.
But more importantly to those in the surrounding communities has been the impact of the Isabella Santos Foundation. Since its founding in 2007, ISF has raised $9 million and donated just over $6 million toward its mission of improving treatments for rare pediatric cancer, expanding research and supporting families.
The organization has funded a dozen clinical research trials; supported six national institutions; built a state-of-the-art treatment facility; and brought one of the nation’s top oncologists to Charlotte to head the Isabella Santos Foundation Rare & Solid Tumor Program at Atrium Health Levine Children’s Hospital.
And to think, as Erin Santos likes to say, it all started with a girl.
“We are the true definition of what a grassroots organization can accomplish,” Santos told Queen City Nerve upon return from her recent honeymoon. “This whole thing started with one little girl and an entire city adopted her and her mission and so many of them are still donating today. What we created and the impact it will have on kids, will outlive us all. I always said that this legacy we created for her is something so special. But now I realize when I look around the table of women who work here at ISF, it has become their legacy too.”
Isabella’s life began without any cause for concern — her first two years were filled with memories and milestones just like every other child — but by the age of 2, she began to complain of frequent back and stomach pain.
After months of misdiagnosis, an MRI revealed a tumor in her abdomen and that the disease had spread to her bone marrow. She was diagnosed with stage 4 neuroblastoma and immediately began chemotherapy.
Isabella spent the next five years fighting, undergoing five relapses, each time her chances of survival reducing drastically. On June 28, 2012, she succumbed to the cancer at 7 years old.
The Isabella Santos Foundation was founded shortly after her diagnosis and originally aimed to help pay the Santos family’s mounting medical bills and fund the constant flights to New York City and Philadelphia in search of effective treatments. Within about a year and a half, ISF transitioned into a charity that helps fund collaborative pediatric cancer research both locally and nationally.
In 2020, the foundation sharpened its mission even further to focus on fulfilling Isabella’s three wishes: to beat cancer, grow hair, and live her dreams.
Funds donated to the “Beat Cancer” program go to Levine Children’s Hospital to help build the ISF Rare & Solid Tumor Program. The program opened in July 2020 with the arrival of world-renowned cancer researcher Dr. Giselle Sholler. Since then, solid tumor patient volume has doubled and patients are traveling to Charlotte from more than 20 countries for care.
The “Grow Hair” program gives to national institutions supporting clinical trials. The goal is to provide safer and more effective cancer treatment options for those fighting.
Through the “Live My Dreams” giving program, ISF partners with organizations such as OneBlood, The Ronald McDonald House of Charlotte and Make-A-Wish Foundation to help support families impacted by childhood cancer.
Erin Santos is a staunch advocate for improving Charlotte’s pediatric cancer treatment options following her own experience navigating the region’s healthcare system.
In a 2016 interview with Creative Loafing, Santos admitted she had to take her home city “out of the equation” when it came to getting the best care for Isabella. She hoped ISF’s efforts would one day allow more families to stay in Charlotte for care.
Now she’s seeing that dream become a reality.
“It no longer becomes a choice they have to make,” she told us. “‘Can we do this? Can our child handle treatment in another city?’ Those questions are now irrelevant because of what we built. It’s what pushes us every day.”
Toward the end of her fight against cancer, Isabella received a special therapy called MIBG that added 10 more months to her life, including another Christmas and another birthday.
At the time, Isabella had to leave Charlotte for her MIBG treatment, which can only be delivered in a lead-lined hospital room that keeps the therapy’s radioactivity in check. Today, this cutting-edge treatment is available at Levine Children’s thanks to funds raised by ISF, and is one of the only MIBG treatment rooms in the region.
ISF may have started with Isabella, but today it is her legacy.
It’s Erin Santos’ dream that her daughter’s fight with cancer will change the outcome for other children through funds raised in her memory.
“Sometimes we get bogged down in the day-to-day work of the foundation, and just when we need that pop on the nose to remind of our impact, we get it; someone tells us their child is alive today because we are here,” she said. “For a long time I felt like we were helping to extend lives, now we are saving them.”
The 15th annual Isabella Santos Foundation 5K for Kids Cancer is scheduled for Oct. 15. Erin Santos recently announced on our Nooze Hounds podcast that it will be the foundation’s last annual race, as they look to explore hosting other, more creative fundraising events.
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