AUSTIN, Texas — Ben Breedlove died three times in December 2011. The last time — on Christmas Day — he did not wake up.
The 18-year-old could have been another name on an obituary page — a tragedy, yes, that his family had to bury someone so young because of a heart condition. But Ben left a legacy — "This is My Story," a YouTube video in two parts that has had a combined 13 million views.
People in 30 countries have watched Ben hold up a series of white index cards with black letters that explain his story from the time he saw a bright light above him at age 4 to his experience at 18 when he went to heaven and didn't want to leave.
Now, his sister, Ally Breedlove, 21, has written about her family's experience and Ben's certainty that heaven exists in the new book "When Will the Heaven Begin? This is Ben Breedlove's Story."
The book is as much about Ben's death as it is about his life and the family that loved him.
The life of Ben
Ben Breedlove came into this world Aug. 8, 1993 — 19 months after Ally was born, and six years before Jake would complete Deanne and Shawn Breedlove's family.
Baby Ben had an "irresistible smile," Ally Breedlove writes.
He looked normal, but at 3 months, he was diagnosed with a heart murmur. By a year old, the murmur was gone, but his pediatrician didn't like the sound of Ben's heart and sent him to a specialist.
At 13 months, he was diagnosed with hypertrophic cardiomyopathy, or HCM. The disease causes the heart muscle to thicken, making it hard for the heart to pump blood. It affects 1 in 500 people and can cause sudden death. Athletes have died on the basketball court or field because of it.
The Breedloves were told there was no cure; there was nothing to be done to fix it. "It was too much to take in," Deanne Breedlove says.
Shawn remembers being told by the doctor that Ben would be "lucky to live beyond his early teens." It was something Shawn filed away. Even today, Deanne doesn't remember hearing those words. She couldn't think that way. It was hard to look at a child who on the outside appeared so normal and think about him having something that could kill him.
''We were not going to start weeping and crying just because some doctor had spoken," says Shawn Breedlove, a real estate land developer. At that moment the family made a decision: They would not worry about something that hasn't happened and instead they decided to be thankful for every moment they have with Ben.
''If we (thought) about too many days in the future," Deanne Breedlove says, "it became overwhelming."
They tried to lessen the effects with medication, diet modifications and limiting some activities. Ben also was later diagnosed with long QT syndrome, another heart condition, which can cause seizures, fainting and sudden death.
Ben would not be able to play all the sports he wanted, but he did learn to wakeboard and could do that as long as the water wasn't too cold for his heart. His parents gave him restrictions, but they also wanted him to live his life to its fullest.
The book recounts that when Ben was in eighth grade, he asked Deanne if he was going to die. She responded that everyone is going to die, but only God knows when: "We don't need to live our lives like they're death sentences; we need to enjoy our lives. I think you do a good job of that."
Still, Ben's heart condition and the threat of it "bumping," or what they called arrhythmia, was always there. Ally Breedlove writes: "Ben's condition didn't go away simply because the family went on vacation. The HCM was always there, coloring every aspect of their lives. It was not a 'once-in-a-while' situation; it was every day, month after month, year after year."
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