Isabella Santos was a spunky 7-year-old girl from Charlotte. She loved to do arts and crafts, sing Taylor Swift songs, and play with her American Girl dolls and her kitty, Jake; she was an amazing swimmer. But a deadly disease took over her body. Her life changed forever when she was diagnosed with stage 4 neuroblastoma. With a survivor rate of 40% and the rate dropping to less than 5% after a relapse, the odds were never in her favor. Her parents, Stuart and Erin, researched relentlessly to find the best hospitals treating neuroblastoma. They transferred the majority of her care from Charlotte to Memorial Sloan Kettering in New York City. Because neuroblastoma is a rare condition with few treatment options, the family created the Isabella Santos Foundation (ISF) to help fund cures to save her life. Over the last four years, they have raised more than $150,000 for neuroblastoma research and other children’s cancer charities such as the Make-A-Wish Foundation and the Ronald McDonald House. They knew that actively funding research was her only chance of survival.
Each year in September, the ISF hosts a 5k in Charlotte to raise money for research to fight neuroblastoma. The fun family event features a 5k, a one-mile fun run for kids, and plenty of food and music. This event reminds us of what is possible when a community comes together to provide hope and to make a difference in the lives of children. It is truly inspiring.
For almost five years, Isabella defied the odds. Countless doctors called her a miracle. Relapse after relapse, she kept fighting … and kept beating it. However, just last month, her parents were told that the cancer had returned and that this time, it would be relentless. Their fight was over. So for the month of June they were with her, lying in bed with her and telling her how much they loved her – how proud they were of her. She died on June 28.
Her family will carry the torch forward with the foundation created in her name. They hope another child can be saved. They will continue to hold this special event each year in her honor to raise funds to fight the awful disease that has stolen their daughter. On June 24, Isabella gave her dad the last gift he would receive from her – an entry to the New York City ING Marathon. Stuart will be running on behalf of Fred’s Team, an organization that raises money for children’s cancer research at MSKCC. Isabella will be there in spirit at the finish line, still cheering him on.
For more information on Isabella’s foundation, go to www.isabellasantosfoundation.com.
Photo credit: Grant and Sophia Santos. Photo by Rachel Wood.
