Highland Village residents Michelle and Steve Bjornberg have lived every parent’s worst nightmare, and are determined to make sure other families do not have to endure a similar experience.
They lost their daughter Sydney this summer to an aggressive form of childhood cancer after a 13-month battle. She was just four months shy of her thirteenth birthday.
“We were at a birthday party and she had a headache,” Michelle recalled. “She was stumbling and her eyes didn’t look right. We took her to the ER and shortly after, an MRI revealed the tumor; and, we’ve lived in hell since that day.”
Sydney’s type of cancer is called DIPG (Diffuse Intrinsic Pontine Glioma) which primarily affects victims during childhood. It affects the pons portion of the brainstem and, because of its location and vital functions, is virtually inoperable if affected by a malignant tumor. Symptoms such as double vision, inability to close eyelids, dropping one side of the face and difficulty chewing and swallowing occur as the loss of motor ability progresses rapidly.
The only option left was to search for drug trials that might potentially stem the cancerous growth. While Sydney initially responded to those, the disease (which is extraordinarily resistant to chemo treatment) continued to progress.
Even more harrowing is that, according to The Cure Starts Now Foundation, less than 10-percent of children with DIPG live longer than 18-months from date of diagnosis; survival is even rarer.
“She could barely move a muscle at the end, it was just grueling,” Michelle said. “I can’t think of a worse death.”
DIPG is just one form of childhood cancer that affects kids every day across all walks of life.
As the Bjornbergs learned more about their daughter’s deadly affliction, they also became frustrated by the disparities they discovered between adult versus children cancers, such as: less than four-percent of federal funding for cancer research goes to childhood cancers, while children make up roughly 20-percent of the U.S. population; pharmaceutical companies fund 60-percent of all adult cancer research, but fund virtually no childhood cancer research; and, an estimated 900 adult cancer drugs are in research and development; but virtually none target childhood cancers.
Before Sydney passed, Michelle and Steve promised their daughter they would do everything possible to raise awareness and funds for childhood cancer, so that no child would ever have to go through a similar experience.
The Bjornbergs teamed up with The Cure Starts Now, which will host the first North Texas 5K Race Against the Odds event on Saturday, Dec. 7, at Unity Park in Highland Village to honor Sydney.
In the meantime, the Bjornbergs continue to create awareness as much as possible.
“Nobody discusses it, nobody wants to talk about it or even imagine it,” Michelle said. “I want people to know childhood cancer isn’t as rare as you think and it can happen to you.”
The 5K Run/Walk will start at 8:30 a.m. and the registration fee is $30 online until December 5, or $40 on race day, starting at 7 a.m. Proceeds benefit The Cure Starts Now and participants can visit www.raceagainsttheodds.com to register or donate.