Isabella Santos spent nearly five of her seven years on Earth battling cancer and for those affected by rare childhood cancers — a legacy that her Ohio University graduate mother, Erin (Myers) Santos, has turned into her life purpose.
As individuals and organizations “Go Gold” in honor of National Childhood Cancer Awareness Month, Erin (Myers) Santos, BBA ’99, continues the work of her firstborn—a little girl who dreamed of a world without cancer and made the world changed for those affected by rare pediatric cancers.
“I just took her lead,” said Santos, a 1999 graduate of Ohio University, of the decision she made in 2007 to establish the Isabella Santos Foundation (ISF), a non-profit organization dedicated to raising human health. the survival rates of children diagnosed with rare childhood cancer.
At the time, Isabella was 2 years old and after months of back and stomach pain, tests and misdiagnoses, she was diagnosed with stage four neuroblastoma, a rare form of childhood cancer. At that point, the Santos family’s life had ended and a new life began.
Erin (Myers) Santos, BBA ’99, is the founder and executive director of the Isabella Santos Foundation, a nonprofit organization in Charlotte, North Carolina that has raised and continues to raise more than $5 million to increase child survival. diagnosed with rare pediatric cancers.
Santos left a six-year career at Lending Tree and stepped into the role of full-time caregiver for Isabella, paving the way for a new calling in her life as Founder and Executive Director of the ISF.
The family spent the next nearly five years in and out of hospitals in New York City, Philadelphia, and their hometown of Charlotte, North Carolina, while Isabella endured chemotherapy, radiation, clinical trials, and nearly every available treatment option—all with optimism and selflessness. .
“For Isabella, it was always about other people,” Santos says. “There were so many times when she would do nothing in the summer because she would cook for the Ronald McDonald House, speak at a Make-A-Wish event, or try to persuade people to donate blood. It was just so inspiring to see someone so young giving so much of herself when she really should have just focused on staying alive. But she always tried to do things for others, which laid the foundation for the ISF.”
Isabella lived the rest of her life with three wishes: beat cancer, grow her and live her dreams. And as her struggle ended on June 28, 2012, Isabella’s wishes and determination remain the pillars of the ISF, which has gone forth in her name and making her wishes come true for others.
To date, the ISF, which received 501(c)(3) status in 2010, has raised more than $5 million – funding invested in childhood cancer research; national pediatric cancer screenings, examinations and treatments; and various forms of support for families facing a cancer diagnosis. The foundation’s work has not only given a voice to rare childhood cancers, but has established Charlotte, North Carolina, as one of the nation’s premier centers for treating childhood cancer.
Thanks to Isabella and the ISF, Atrium Health’s Levine Children’s Hospital in Charlotte now offers an MIBG therapy suite, making the treatment Isabella had to travel elsewhere available in her hometown. And a $5 million pledge from the ISF has led to the hospital’s Isabella Santos Foundation Rare & Solid Tumor Program, which is led by world-renowned pediatric oncologist Dr. Giselle Sholler.
“The program has gone from about 30 children to more than 140 in just a year,” Santos says. “We’ve got about two years to go on our $5 million commitment to Levine, but I think the state that program will be in two years from now will be every child with a rare cancer in the U.S. now going to Isabella’s birthplace will come to the best care.”
The Isabella Santos Foundation’s work is a family affair for Erin (Myers) Santos, pictured here with her children, Grant and Sophia, during one of the foundation’s annual fundraisers.
But Isabella’s legacy and the work of the ISF extend beyond the Santos community of North Carolina. The ISF has helped fund clinical trials at Memorial Sloan Kettering Cancer Center in New York City and the Children’s Hospital in Philadelphia, places where Isabella was treated. And in 2020, the ISF partnered with another foundation — named in honor of another child lost to cancer — to fund a pediatric cancer clinical trial at Nationwide Children’s Hospital in Columbus, Ohio, Santos’ hometown.
“Although our focus is local, we also try to make an impact in other areas,” Santos explains. “Being from Ohio and based there, giving back to where I come from is important to me, and Nationwide Children’s Hospital is a great children’s hospital. The $250,000 we’ve given to Nationwide is the first time we’ve made such a big impact in another state.”
According to Santos, the ISF is well on track to raise $1.5 million to $2 million this year — all with a staff of just four mothers from Charlotte, North Carolina, who work from home to continue Isabella’s legacy. . On March 9, what would have been Isabella’s 16th birthday, Charlotte’s skyline was lit purple in honor of that legacy and in conjunction with ISF’s Star Light Star Bright Luminary Dedication event, which raised more than $91,000 to help Dr. Sholler’s clinical cancer clinic for children. trial at the Levine Children’s Hospital.
“Isabella’s impact will outlive all of us,” Santos said. “I always wish she were here, but I feel like her death has made us all discover what our purpose in life should be. Our lives, and the lives of so many others, have been forever changed by being a part of this, and it is such an honor to leave a lasting legacy for her.”
Isabella Santos passed away on June 28, 2012 at just 7 years old, but in her mother’s words – and because of her mother’s work – her impact will “outlive us all”.
The ISF will host a golf tournament in Columbus, Ohio next spring/early summer to continue its support of Nationwide Children’s Hospital. Ohio University alumni interested in participating are invited to contact Erin Santos at firstname.lastname@example.org.
For more information about the Isabella Santos Foundation, click here.