COLUMBIA, SC (WIS) - It's been nearly a month since a little lamb went on a big journey to fight pediatric cancer nationwide.
Lamby and the nonprofit Lambs for Life was the brainchild of 10-year-old Alex Arrieta of South Carolina before he passed away from acute myeloid leukemia back in 2016.
His goal was to impact the lives of other children with cancer, and thanks to a little help from Alex's dad, his little lamb may end up helping to rewrite the script on how pediatric cancer is researched in America.
"He said I want thousands of lambs, and we said we can't take thousands of lambs to the hospital," said Brandon Arrieta, Alex's dad and now executive director of Lambs for Life. "And he said they're not for me I want you to find kids with cancer and give them to them."
It was Alex Arrieta's one request when he found out his Leukemia was back a second time. He already had his own little lamb and he wanted other children to have one, too.
Arrieta explained why Alex wanted a lamb.
"He just shrugged his shoulders and said because it's the Lamb of God is holy and that's how we found out Alex's true relationship with Lamby and it just inspired us and everyone around us," he said.
Alex's dream of giving lambs to other children fighting cancer has been coming true since his passing, and now his own Lamby is tackling pediatric cancer on Capitol Hill.
"Step one was the legislation we already had passed in March which identified and acknowledged for the first time that pediatric cancer is a completely separate animal from adult cancer," Brandon said.
Brandon says they were shocked when they learned during Alex's fight that only 4 percent of government cancer research funding goes to childhood cancer through the National Cancer Institute (NCI). He adds that often means pediatric cancer research is dependent on cancer research for adults.
"It's an almost archaic trial and error approach of how much of this adult drug do we need to dilute for a child's body to address this cancer," Arrieta said. "Over 95 percent of childhood cancers are never seen in the adult population and most people don't know that."
So for the last two years, Brandon has been working to change that. He just got back from a Senate health subcommittee meeting with NCI.
"The next step is getting all this information back from NCI and having experts comb through it," said Brandon. "I'm going back to DC in July to meet with the House counterpart of the Senate subcommittee."
In what Arrieta says is a five-step phase plan, ultimately he says the final phase would be to have NCI set up a separate pediatric division with funding from the federal government by 2020.
Currently, there is a pediatric oncology branch of NCI, but Brandon believes with a separate division funding and research could be better directed to help fight childhood cancer in the US.
"It will be the first time that pediatric cancer has had specific appropriations going solely to pediatric cancer," Arrieta said.
If it happens, it would be in part thanks to a little boy and his little lamb, that's now fighting like a lion for children everywhere.
Brandon tells me based on the report they get back from NCI about the hearing they had in May, they will mandate another report specifically on the development of this separate pediatric division and what the initial budget would need to be for it to be established.