SebastianStrong and Castaways Against Cancer raise funds for Sylvester Comprehensive Cancer Center
By Julie Levin
Photography by Jeffery Salter
lone in his kayak, with miles of ocean surrounding him, Oscar Ortiz thinks about his middle son, Sebastian, who lost his battle with cancer when he was just 16 years old.
“My kayak has pictures of children we lost to cancer,” Ortiz said. “Sebastian’s photo is on my left-hand side, where my heart is. I spend a lot of time talking to him.”
Ortiz’s commitment to his son’s legacy inspired him to complete a week-long kayak expedition this year. The South Florida father was part of a group that kayaked 160 miles between Miami and Key West to raise funds and awareness for pediatric cancer research. While it was the third time Ortiz had completed the exhausting mission, it was the first time he and his fellow paddlers had put their efforts toward raising funds for Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine.
Working with Castaways Against Cancer, a local group that’s been raising money to fight cancer for 21 years, the kayakers raised just over $100,000 to help Sylvester researchers find less toxic, more targeted treatments for children with cancer. Their gift was matched dollar for dollar by Sylvester for a total research investment of $200,000.
“Sebastian’s parents, Oscar and Rose Ortiz, along with his brothers, Oscar and Lucas, are truly remarkable,” said Stephen D. Nimer, M.D., director of Sylvester, the Oscar de la Renta Endowed Chair in Cancer Research, and professor of medicine, biochemistry, and molecular biology at the Miller School. “Their ability to channel their loss to improve the lives of other children living with cancer in Sebastian’s memory is an inspiration to all of us. We are grateful for their partnership and boundless generosity.”
A common thread
There’s a common thread among the kayakers: a unique brotherhood formed at Christopher Columbus High School in Miami, where many of their paddlers are faculty or alumni, like Oscar Ortiz. Steve O’Brien, a teacher at the school, began Castaways Against Cancer in 1998 after he lost his mother and grandmother to cancer. Looking for a way to “light a candle instead of cursing the darkness,” he and three colleagues paddled their way from Key Largo to Key West.
After raising $10,000 their first year, their grassroots effort has grown. In 2018, they became the eighth team — the first in Florida — to raise more than $1 million for the American Cancer Society.
Eric Pino, the captain of Castaways Against Cancer, calls his group “a bunch of sea hippies” who like to paddle and fight cancer. Pino was also Sebastian Ortiz’s cross-country coach at Columbus High.
“Sebastian was a fine runner and an impressive kid,” Pino said. “He was mature, very introspective, and kind.”
Sebastian battled with a rare form of cancer called rhabdomyosarcoma. His family was dismayed to learn that new cancer treatments for children lag well behind those for adults nationwide, and adult protocols — often used for children — don’t produce the same results. Since 1980, only four drugs have been approved in the first instance for use in children. In Sebastian’s case, there was only one treatment protocol available — a decades-old regimen that required 30-plus rounds of chemotherapy, 23 doses of radiation, and four surgeries.
“The side effects of these drugs are brutal,” Ortiz said. “Sebastian would have likely needed a heart transplant had he survived.”
Honoring his son’s memory
After his son passed, Ortiz sought a way to honor Sebastian’s memory and founded SebastianStrong — a nonprofit that funds innovative research for childhood cancers. Together with Castaways Against Cancer and through the new partnership with Sylvester, the organizations are supporting the work of Nagi Ayad, Ph.D., co-director of Sylvester’s Brain Tumor Initiative. Dr. Ayad is seeking safe, effective therapies for medulloblastomas, the most common type of brain tumors in children.
“The transformative support from SebastianStrong, Castaways Against Cancer, and Sylvester will allow us to use novel computational platforms we have developed to identify safe therapies for children suffering from brain cancer,” said Dr. Ayad, who’s also an associate professor in the Department of Neurological Surgery at the Miller School.
The SebastianStrong and Castaways Against Cancer kayak expedition — the 20/20 Perfect Vision Tour — took place June 7-13. The kick-off was tempered by social distancing due to the COVID-19 pandemic, but people sent good wishes via social media. Dr. Nimer inspired the group with a video message. Ortiz’s wife and their sons Oscar, 22, and Luke, 17, were part of the road crew assisting the kayakers.
While Dr. Ayad and his team do their work, Ortiz and his family will continue doing whatever’s necessary to honor Sebastian’s legacy and ensure generations of children with cancer have more effective, less toxic treatments available. Ortiz says it’s the least they can do for their kind-hearted son who befriended everyone he met.
“Sebastian was incredibly gracious and full of humility during his battle,” Ortiz said. “He’s what keeps me moving. I’ve got to make it better for the next person.”
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