Emery Miller’s recent trip to Washington included a tour of the White House and other sightseeing spots around the nation’s capitol. And presumably, like many boys his age, one of this Chandler 13-year-olds favorite parts was getting to attend a Washington Capitals hockey game.
But, unlike most boys his age, when he got to D.C., Emery had the ear of a top White House aide during his visit; He had the chance to talk to Jon Carson, the White House’s director of the office of public engagement, about heart disease.
“I asked him if he knew anything about screening for congenital heart disease at birth or before birth,” Emery said.
What’s more, the middle-schooler didn’t even know he was going on the trip until a mere two weeks before.
The American Heart Association nominated Emery for the trip and, despite his age, he knows quite a lot about heart disease.
“It was such a big deal, they didn’t even tell us until they were sure he was chosen,” said Lori Miller, Emery’s mother.
Emery was diagnosed with a hole in his heart and a rare type of arrhythmia two days after he was born, Lori Miller said.
He had his first open heart surgery at 6 months, she said. After that, it was a series of other open-heart surgeries at 2, 4, and 6 years old.
“I don’t really remember it,” Emery said. “I look at the pictures and I kind of remember the last one from the pictures.”
But awareness is something he and his family are very passionate about. Emery has attended every Phoenix Heart Walk since he was born, with the exception of this year, he said.
This year, he was in Washington.
Of course when he’s not in talks with top presidential aides, Emery likes to spend his time playing baseball; he plays club ball and for Horizon Community Learning Center, where he attends seventh grade.
“His father and I definitely made a conscious decision to not treat him any differently,” Miller said. “If anything, we had higher expectations for him. If we treated him any differently, we would have been doing a disservice.”
Although Emery can’t play his favorite sports — football and hockey — because they’re contact sports, he still can play baseball as well as any other kid, his mother said.
“We’ve tried to let him live life,” Miller said. “He wears a heart protector when he plays and his endurance isn’t as strong as the others, but if you didn’t know him, you wouldn’t know he was different.”
And while going to the nation’s capital and seeing Emery speaking with a top advisor was a big moment in both mother and son’s life, it isn’t when Miller was most proud of her son.
Instead, every time her son runs onto the diamond, it’s the proudest moment for her, she said.
“I’m always so incredibly proud of him,” she said. “(Last) Saturday, he hit a triple,” along with a pair of doubles.
Those are the moments that stand out to her.
“No one ever dreamt he would do anything he’s done,” she said, a smile ringing in her voice.
This weekend, he played in a tournament and it will probably be one of the last ones for a while, Emery said.
He goes in for heart surgery on April 5 at Phoenix Children’s Hospital, but this time, he won’t have to have his chest opened. Instead, the doctor will insert a catheter a through a small incision to help repair a valve on his heart, his mom said.
“I’m a little nervous,” Emery admits. “This is the first one I’m living through. I don’t really remember the other ones, I was so young.” The recovery time is only about six weeks to two months, Miller said. The recovery time on the earlier surgeries neared six months.
“It’s huge, it’s mind-boggling,” she said about the advances.
After that, he’s back in the game.
“I’m not stopping for nothing,” he said.
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