Isabella Santos lives on in the Santos home.
Her mother, Erin Santos, said Isabella’s room is just as it has always been, filled with princess costumes and American Girl dolls.
“I still trip over her red boots,” Erin Santos said.
Isabella was diagnosed with neuroblastoma, a rare form of childhood cancer, at 2 years old. She went in and out of remission for years.
Isabella died June 28, 2012; she was 7 years old.
During her sickest times, she stayed steadfast in her pursuits to grow hair, beat cancer and live her dreams: raising kittens and one day becoming a mother.
“Isabella always gave to charity,” Santos said. “She volunteered at the Ronald McDonald house and donated all of her birthday gifts to the kids on 11th floor at Levine (Children’s Hospital).”
When it comes to the Isabella Santos Foundation, Erin said, Isabella always knew she was the star of the show, just as she understood the organization was her legacy.
“She used to proudly say ‘I’m famous,’ ” said Santos.
“Every race, she would walk or be pushed in a wagon until the last 10 feet, and then she would run to the finish line,” she said.
Stuart and Erin Santos started the Isabella Santos Foundation in 2009 as a way to raise money for Isabella’s medical bills. After learning about the lack of funding for neuroblastoma research, the Santoses raised money to help find a cure.
Through 5K footraces and other fundraising events, ISF raised $7,000 in 2009. To date, the foundation has raised $650,000.
The goal is to reach $1 million by the end of this year.
Funds raised by ISF go to neuroblastoma research, as well as supporting local charities serving children and families with childhood cancer, Erin Santos said.
In 2013, ISF gave $100,000 for neuroblastoma research to Memorial Sloan Kettering Cancer Center in New York. The foundation also gave $20,000 to Carolinas HealthCare System’s Levine Children’s Hospital, $20,000 to the Ronald McDonald House of Charlotte, $20,000 to the Make-A-Wish Central & Western Carolinas and $20,000 to various pediatric cancer charities and as financial support for local families battling cancer.
ISF’s annual 5K Race for Kids Cancer presented by the Charlotte Checkers will take place 8 a.m. Sept. 20 at Ballantyne Corporate Park. The event includes a 10K, 5K and 1-mile family fun run. Other activities include a kids’ zone with games, face painting, slides, a bounce house and a photo booth. There also will be a raffle and silent auction with items including beauty and spa packages, sporting events, date nights, vacations and jewelry.
ISF’s Development Director Maitland Danner said, “This is a family event. All the kids’ activities are free to the public and we encourage people who are not running to come out, have fun and raise awareness.”
“Isabella believed in helping people, and we want kids to be able to associate with her because of that,” Santos said. “I still do it for her. It keeps her memory alive. I allows me to feel like a part of her still lives.”