A local family is thrilled that an experimental treatment they took a chance on could lead to more life-saving therapies for cancer and other deadly diseases. Less than a week ago, the FDA approved the first gene therapy for a form of leukemia.
A Philipsburg girl, was the first person in the world to receive the treatment. Doctors diagnosed Emily Whitehead with acute lymphoblastic leukemia (ALL), when she was five. In most children, chemotherapy cures ALL, but not Emily. That didn’t leave the family with many options.
Her father Tom says, “We were down to making the decision to try an experimental treatment or go home on hospice.”
The Whiteheads weren’t ready to quit fighting and that’s how Emily became the first child in the world to have her T-cells, a type of white blood cell, collected and genetically modified to kill leukemia cells.
“We fell like it was meant to be,” Tom says. “We just kept, really there were days when we were just trying to fight to get through today, so that she was here to fight tomorrow.”
Emily suffered life-threatening complications from the gene therapy. Now 12, she doesn’t remember much about those tough times at Children’s Hospital of Philadelphia. Other memories are more vivid.
“I had fun when I was doing it because they had playrooms and I would go down and they had bingo. I remember I really liked that,” Emily says.
She says Penn State’s Thon, the major fundraiser for childhood cancer is a good place to have squirt gun fights with your friends, especially those fighting cancer.
“I tell them to never give up, keep fighting, and always keep believing in yourself,” Emily adds.
This past May marked five years cancer-free for Emily and she’s now considered cure.
Her father says, “We’re very proud of Emily that she never quit and very thankful we had the help to get Emily through her tough times.”
Ever since, Emily’s own body began fighting her leukemia, the family has been trying to help every child with cancer find their miracle.
Their Emily Whitehead Foundation raises awareness and funds for research. Tom recently testified before the FDA in favor of the gene therapy now called Kymriah.
He says, “It’s really changing the world and there’s many more cancer trials now coming form Emily’s treatment to help with other cancers as well.”
And Emily adds, “I think it’s amazing because so many other kids will be able to get the treatment that I got.”
On October 28, at the Valley Forge Casino, the Emily Whitehead Foundation will be bringing together patients who received the gene therapy treatment after Emily and doctors involved in the treatment. They want to have a nice event for the kids and also raise money to keep fighting cancer.