When Alex Arrieta's leukemia came back in January 2016, he told his parents he didn't want to be showered with gifts like he had been the first time around.
Instead, the 10-year-old Hilton Head Island boy said he just wanted stuffed lambs.
Known to many as "Smiles," Alex had already fought acute myeloid leukemia five months earlier. His stuffed lamb, Lamby, was there with him every step of the way.
Alex told his parents, Caroline and Brandon Arrieta, that he wanted thousands of lambs to give to other children fighting cancer. He asked that this effort be called Lambs for Life, because lambs symbolize the lamb of God.
"That was his response to being told his cancer was back," Brandon Arrieta said. "He never cried once about it. He never questioned it."
He and Caroline sprang into action, collecting lambs as their son requested.
Soon after, Arrieta decided to add another component to the mission of the new Lambs for Life organization, which is awaiting approval for 501(c)(3) status. He said there are only a few medications for children with cancer, and none of them would have worked for Alex. The adult medication he was given was too strong for his little body.
"I wanted to find out what in the hell was going on," Arrieta said. "Why does my son have cancer again? Why are we making massive strides in adult cancer but not for our children?"
The more answers Arrieta found, the more he found himself asking how the system could be changed.
According to the St. Baldrick's Foundation, only four percent of the federal funding of cancer research is allocated for childhood cancer.
"The problem is we look at childhood cancers through the eyes of adult cancer, and we look at them in terms of numbers," Arrieta said. "Children are a small subset of the disease. Well, there are fewer children than adults anyway, so you can't look at it that way."
In a last-ditch effort to save Alex's life, he was given a combination of adult drugs that had only been tried a handful of times before. The drugs killed the cancer, but unfortunately, they also took Alex's life. He died April 27, 2016.
Arrieta is now pushing for the restructuring of federal cancer funding. In May, he visited Washington, D.C., where he spoke with several legislators and their staff members about the issue. He said Sen. Lindsey Graham (R-SC) and his senior advisors have been supportive of his efforts.
"We've come a long way in this first year," Arrieta said. "It's been the most painful, horrific way of seeing some of the most beautiful things in this world and outside this world. I'd give it all back to have Alex back."
Amy Coyne Bredeson of Bluffton is a freelance writer, a mother of two and a volunteer with the Tuberous Sclerosis Alliance.