‘Pretty much a warrior’: Roanoke father raises awareness for 6-year-old son’s terminal diagnosis

Congenital heart disease affects one of every 100 babies

ROANOKE, Va. – A Roanoke father is trying to raise awareness about congenital heart disease, all while preparing his own son for hospice.

“He’s always happy. He’s always been smiling,” Phillip Page said. “Pretty much a warrior.”

A big seventh birthday is just weeks away for Bentley Page, but that’s a birthday he may never get to see.

“They told us if he lived to be a year, he was a blessing. If he lived to be two, he was a miracle,” Page said. “You’re supposed to be able to protect your kid but in this situation, you can’t.”

Page said Bentley was diagnosed with a congenital heart defect, or CHD, before he was even born.

“When he’s born, you know he has an expiration date on him,” Page said.

His nearly seven years of life have been marked with hospitalizations, treatments and near-death experiences.

“It’s a whole lot to go through getting the news, trusting your son in the hands of somebody that you didn’t know to do an operation, trusting an experimental procedure in hopes that it would work,” Page said.

Unfortunately, nothing has worked and doctors say nothing will. They told his parents last month to make Bentley comfortable. Wednesday, they called in hospice to do just that.

“I don’t think there’s words to describe it. It’s sad. Makes you angry,” Page said.

Amidst his own heartbreak, Page has found a way to turn pain into purpose by driving awareness to CHD.

According to the CDC, they’re the most common type of birth defect, affecting one of every 100 babies born in the U.S. every year. Of those, one in four are critical.

Page said the funding needed to change those statistics just isn’t there. It’s not enough to help his son, but he’s hoping his story can make a difference.

“It can help other people in the future, other families and maybe not get to this point this fast,” Page said. “I don’t want people to go through this.”

You can donate to CHD research through the Carilion Foundation, indicating your gift is specifically for CHD.

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