SAN FRANCISCO (KNTV) - At just 13 years old, one San Francisco boy has survived a rare congenital heart disease, and in doing so, has lived life to the fullest.
Sean White has become a role model for countless people, even the fire chief of San Francisco, Joanne Hayes-White, who also happens to be his mom.
Former U.S. Secretary of State and Four-Star General Colin Powell awarded Sean a medal of courage at the Dreamforce event Thursday night in San Francisco.
Hayes-White described her son as the not only the youngest of her three boys, but the most active.
After two uneventful pregnancies, she figured it would be the same for her third child, but in his first week home, Sean was struggling with his breathing.
At first, doctors told Hayes-White that it was nothing to worry about, but after persisting she got the news she wasn't prepared to hear.
"He was about 18 hours away from heart failure," Hayes-White said. "I was in disbelief for brief period of time and then the mom kicked in, in me, whatever we need to do, we need to do."
Doctors diagnosed Sean, at just two weeks old, with a rare congenital heart disease called "Shone's Complex."
It made it difficult for blood to circulate in and out of the left side of Sean's heart.
Dr. David Teitel, UCSF Chief of Pediatric Cardiology, says the heart center only sees a handful of cases of Shone's Complex a year.
"After he was born, he would have symptoms of this blood backing up in his lungs and so he would be breathing hard, and then have very poor pulses in his body. So he would have been at risk of dying right away at birth if it wasn't diagnosed."
Immediately after the diagnosis, Sean underwent one surgery.
Then the family learned from Teitel that Sean would have to undergo two more, this time, open-heart operations.
The first would happen when Sean was 7-months-old, and then another one at 2-years-old.
Hayes-White said she had been used to responding to emergency situations, but not when it hit so close to home.
"I sort of left my firefight career side and the mom part of me was very worried. It's kind of the worst thing in the world to have an injured or sick child," she says.
Sean bounced back after each surgery, his mom says perhaps showing what would happen in the years to come with a boy that always refuses to sit around.
Up until a couple years ago, the now 7th-grader was having major problems with breathing, forced to stay in the hospital at least once a year, for at least a week each time.
"It was kind of hard 'cause I didn't want to be in the hospital and I never really knew when I was going to get to come back home," Sean recalled.
He's still living with certain limitations because of the heart disease.
He says his doctor told him he can't play his second-favorite sport of basketball in high school because of his health.
Still, everyday he plays baseball, soccer and basketball.
His hope is to inspire other kids, especially those who are struggling, with three simple words: "Never give up."