Sandra Tillman lost her 19-year-old son, Devon Tillman, to cancer nearly a year ago.
When he was diagnosed, Devon Tillman tackled the disease head-on, launching numerous blood drives for those like him who needed the blood and platelets to survive.
Now, Sandra Tillman has joined mothers across America urging the U.S. Congress to increase funding for juvenile cancer research.
Devon Tillman was diagnosed with Ewing sarcoma in 2016, but didn't let the disease take away his desire to make other people happy. Even in the face of terminal cancer, Devon Tillman smiled.
"I have always liked humor and so cancer is not going to change that," Devon Tillman said in December 2016 as he helped arrange a Christmas blood drive. "The person who needs the blood, they need a certain blood type, and if there isn't that kind of blood type in the hospital, it has to get flown over, and if it doesn't make it in time, some people with their transfusions, they die."
Since the death of her son, Sandra Tillman has made her own efforts to push for additional governmental funding for juvenile cancer research.
"It may be that they hold the key to some of the things with the adult world of cancer, but they are looking at it from the adult side instead of the children's side and it seems to me like it should flip," Sandra Tillman said.
Sandra Tillman belongs to a group called 46 Mommas, mothers from across America who have found themselves facing the tragedy of childhood cancer. Along with the fundraising organization St. Baldrick's Foundation, Tillman, 46 Mommas and about 300 other childhood cancer research advocates went to Capitol Hill earlier this year to urge lawmakers to support the STAR Act, which stands for for survivorship, treatment, access and research.
"I have an obligation to Devon to do that," Sandra Tillman said. "Had we known more before, it may not have made a difference, you know, in what he dealt with, but had people stood up in the last 30 years and fought for this, we might have had more change where more research was done where we wouldn't lose as many kids as we're losing right now."
Dr. Maria Velez specializes in pediatric hematology and oncology at Children's Hospital in New Orleans. She also serves on the faculty at LSU Health New Orleans.
"Part of is the STAR program is dedicated specifically to fund research, cancer research for children and adolescents," Velez said.
As one of Devon Tillman's doctors, Velez feels his voice is still being heard in the fight to fund research.
"Yes, once we find the right key, we can open any door. Definitely. Definitely. He was an inspiration to all of us," Velez said.
The U.S. House of Representatives and the U.S. Senate passed the STAR Act this week. One of those voting was House Majority Whip Steve Scalise (R-La.), who played on a baseball team with Devon Tillman's father.
"I was saddened to hear Sandra's story, and to learn about the full scope of hardships that families experience when their child is diagnosed with cancer," Scalise said in a statement. "I look forward to working with my colleagues to advance more legislation like the Childhood Cancer STAR Act that could improve families' lives in Louisiana and around the country."
"Devon was a realist, but he always had hope and for him you don't just sit back and let it happen, you go out and you engage," Sandra Tillman said. "And he did."
The STAR Act heads to President Donald Trump, who will sign it into law.
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