As individuals and organizations 鈥淕o Gold鈥 in honor of National Childhood Cancer Awareness Month, Erin (Myers) Santos, BBA 鈥99, is continuing the work of her firstborn鈥攁 little girl who dreamed of a world without cancer and has changed the world for those affected by rare pediatric cancers.
鈥淚 was just taking her lead,鈥 Santos, a 1999 Ohio University graduate, says of the decision she made in 2007 to start the Isabella Santos Foundation (ISF), a non-profit organization dedicated to increasing the survival rates of children diagnosed with rare pediatric cancers.
At that time, Isabella was 2 years old and, after months of back and stomach pain, tests and misdiagnosis, was diagnosed with stage-four neuroblastoma, a rare form of pediatric cancer. In that moment, the life the Santos family had ended, and a new one began.
Santos left a six-year career with Lending Tree and stepped into the role as full-time caregiver for Isabella, which paved the way for a new calling in her life as founder and executive director of the ISF.
The family鈥檚 next nearly five years were spent in and out of hospitals in New York City, Philadelphia and their hometown of Charlotte, North Carolina, as Isabella weathered rounds of chemotherapy, radiation, clinical trials and nearly every treatment option available 鈥 all with optimism and selflessness.
鈥淔or Isabella, it was always about other people,鈥 says Santos. 鈥淭here were so many times that she would not do something during the summer because she would be cooking for the Ronald McDonald House or speaking at a Make-A-Wish event or trying to get people to come out and donate blood. It was just so inspiring to see somebody that young who gave so much of herself when really she should have just been focusing on how to stay alive. But she was always trying to do things for others, which laid the foundation for the ISF.鈥
Isabella lived the remainder of her life with three wishes: Beat Cancer, Grow Hair, and Live Her Dreams. And while her battle ended on June 28, 2012, Isabella鈥檚 wishes and determination continue to serve as the pillars of the ISF, which has carried on in her name and is making her wishes come true for others.
To date, the ISF, which was granted its 501(c)(3) status in 2010, has raised more than $5 million鈥攆unding that is invested in pediatric cancer research; national pediatric cancer trials, studies and treatments; and various means of support for families faced with a cancer diagnosis. The foundation鈥檚 work has not only given a voice to rare pediatric cancers but has established Charlotte, North Carolina, as one of the nation鈥檚 top centers for pediatric cancer treatment.
Because of Isabella and the ISF, Atrium Health鈥檚 Levine Children鈥檚 Hospital in Charlotte now offers an MIBG Therapy suite, making treatment that Isabella had to travel elsewhere to receive available in her hometown. And a $5 million commitment from the ISF has established the hospital鈥檚 Isabella Santos Foundation Rare & Solid Tumor Program, directed by world-renowned pediatric oncologist Dr. Giselle Sholler.
鈥淭he program has gone from serving around 30 kids to over 140 in just a year,鈥 says Santos. 鈥淲e have about two years left on our $5 million commitment to Levine, but I think the state of where that program will be in two years will be that every kid diagnosed with a rare cancer in the U.S. will now come to Isabella鈥檚 hometown to receive the best care.鈥
But Isabella鈥檚 legacy and the ISF鈥檚 work extends beyond the Santos family鈥檚 North Carolina community. The ISF has helped fund clinical trials at Memorial Sloan Kettering Cancer Center in New York City and Children鈥檚 Hospital of Philadelphia, places where Isabella underwent treatment. And, in 2020, the ISF partnered with another foundation 鈥 named in honor of another child lost to cancer 鈥 to co-fund a pediatric cancer clinical trial at Nationwide Children鈥檚 Hospital in Columbus, Ohio, Santos鈥 hometown.
鈥淲hile our focus is local, we do try to make impacts in other areas as well,鈥 Santos explains. 鈥淏eing from Ohio and having my grassroots there, giving back to where I鈥檓 from is important to me, and Nationwide Children鈥檚 Hospital is an amazing children鈥檚 hospital. The $250,000 that we gave to Nationwide is the first time that we鈥檝e made such a large impact in another state.鈥
According to Santos, the ISF is on pace to raise $1.5 million to $2 million this year 鈥 and all with a staff of just four Charlotte, North Carolina moms, working out of their homes to continue Isabella鈥檚 legacy. On March 9, which would have been Isabella鈥檚 16th birthday, the Charlotte skyline was lit in purple in honor of that legacy and in conjunction with ISF鈥檚 Star Light Star Bright Luminary Dedication event, which raised more than $91,000 to fund Dr. Sholler鈥檚 pediatric cancer clinical trial at Levine Children鈥檚 Hospital.
鈥淚sabella鈥檚 impact will outlive us all,鈥 says Santos. 鈥淚 would always wish that she were here, but I kind of feel like, through her death, we鈥檝e all figured out what our purpose in life is supposed to be. Our lives, and the lives of so many others, are forever changed by being a part of this, and it鈥檚 such an honor to leave a lasting legacy for her.鈥
The ISF is organizing its first in support of children fighting rare cancers at Nationwide Children鈥檚 Hospital. The event is planned for May 2 at Jefferson Country Club in Blacklick, Ohio. Ohio University alumni interested in getting involved are invited to contact Erin Santos at erin@isabellasantosfoundation.com.