“Mom, my body aches.”
September is Childhood Cancer Awareness Month, and a Wood-Ridge couple whose 13-year-old son died of AML leukemia is reminding people to “Go Gold” in the hopes of increasing scarce funding for pediatric cancer research.
Local athletic teams are sporting gold socks, schools are sponsoring Crazy Hair Day and other events and Times Square will be lighting itself gold, among other events.
Linda and Richard Venezia have been a driving force behind the movement, thanks to their Benjamin’s Hope 4 the Future foundation — named for their first-born son, who died in December 2012, nine months after he was diagnosed.
The 501(c)3 organization has helped families in need, raised funds for research and established an annual scholarship for young community volunteers.
“Childhood cancer is not that rare,” the Venezias said.
Money for research, unfortunately, is.
“Only 4% of funding is allocated to pediatric cancer research, and only two new drugs for children have been developed within the 20 years,” the couple said.
The Venezias received Benjamin’s leukemia diagnosis in late March, 11 days after his 13th birthday, when he was admitted to the hospital with a white cell count over 219,000.
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• 1 in 330 children are diagnosed with cancer;
• 1 in 5 children will die;
• 3 in 5 will develop secondary longterm side effects;
• Childhood cancer receives only 4% of the NCI budget for cancer research;
• Cancer is the leading cause of death by disease in children;
• Only 2 new pediatric cancer drugs has been developed in over 20 years.
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He was later diagnosed with Acute Myeloid Leukemia (AML), a high-risk disease that’s difficult to treat.
After several rounds of ineffective chemotherapy, Benjamin had a bone marrow transplant that November. He was determined to graduate from 8th grade, but he didn’t make it to Christmas.
Among the many life-shattering lessons for the Venezias, they said, was the fact that Benjamin was being treated for “a very aggressive cancer that standard drugs do not cure.
“A computer system chose our sons treatment plan, not his doctors, not his parents but a random selection made by a computer program,” they added. “As luck would have it, the computer system chose the standard treatment plan, leaving the clinical trial he was participating in pretty useless.
“We now are left to wonder whether the outcome could have been different had Benjamin been chosen for the alternate treatment which offered a different drug. We struggle to understand how our society could or would allow life and death decisions to be made by a computer system.”
The Venezias blame no one for Benjamin’s death.
“The lack of pediatric cancer drugs for AML killed our son. The lack of funding for pediatric cancer killed our son,” they said. “It is very frustrating to know that children are treated with adult drugs. It is frustrating to know that as a parent your hands are tied.
“We live in a world where the impossible is possible,” the Venezias said, “yet we still have no cure for cancer and thousands of children die from cancer every year.
“We cannot continue to avoid funding pediatric cancer research and need to start developing new drugs that actually cure cancer,” they said. “We need to fight for our children.”
You can join the Venezias in their fight to turn the tide.
GO TO: BenjaminsHope4TheFuture.org
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