Pa. high schooler stares down Marfan syndrome

Inside the 6-foot-7, 170-pound frame of Jake Wilson beats a heart that belongs to basketball.

Unfortunately, the Bonner-Prendergast sophomore can't play - for now - the game he loves.

At 12, Wilson, now 15, was diagnosed with Marfan syndrome, an inherited disorder that affects the fibers that support and anchor organs and other structures in the body, according to the Mayo Clinic.

A related heart valve issue led Wilson's parents and doctors to keep him off the court this season, and Wilson - considered a Division I talent - may never play competitively again.

"He's holding out hope for a miracle," said Wilson's father, Ron, a center on Villanova's 1995 Big East championship team. "It's tough. How do you tell a child who loves something that it's been taken away from them?"

In 2014, Isaiah Austin, a 7-1 former standout at Baylor, went undrafted after being diagnosed with Marfan syndrome just days before the NBA draft. That ended his career before it began.

For Wilson, giving up on the game - though his role in it may change - doesn't appear to be an option.

"I guess I just have a false sense of hope," Wilson said. "Not being able to play, it just seems like if you give up on it completely . . .

"My dad taught me that if you love something, you truly have to go after it."

Basketball is, after all, in Wilson's DNA.

Ron Wilson was a 6-11 Wildcat with size-17 shoes who blocked seven shots in a 1994 game against St. John's. Ron later joined the Harlem Globetrotters and also played overseas.

"This is tough for a 15-year-old who loves basketball and wanted to follow in my footsteps," said Ron, who is also the Friars' junior varsity coach. "It's hard for him to come to grips with it.

"He gets upset. He cries. It's an emotional roller coaster. It's something I wouldn't be able to deal with myself."

Father and son are inseparable, according to Jake Wilson, and share a bond that extends beyond basketball.

"We sit down and talk a lot," said Wilson, who at 15 already wears a size 15 shoe. "We have a lot of heart-to-heart conversations."

Ironically, it was Ron's heart that led to his son's diagnosis and perhaps saved Jake's life.

In 2010, Ron, who played high school basketball at Cardinal Gibbons in Raleigh, N.C., had four open-heart surgeries in 17 days after complaining of chest pain.

He has a mechanical heart valve and a sleeve around his aortic root, which he said had begun to "peel like a banana."

Tests also revealed that Ron had Marfan syndrome.

As a result, he and his wife, Leeydra, had their three children tested. Only Jake, the youngest, tested positive.

"I don't know what would have happened if I wasn't diagnosed," said Ron. "He'd be playing. I know he would. And something fatal could have happened."

People with Marfan syndrome who have abnormal heart valves are at risk for heart failure, according to the Mayo Clinic, and physical exertion could exacerbate the risk.

"It was a blessing in a sense," Ron said of his diagnosis. "[But] it's tough. I blame myself."

The syndrome is one of the most commonly inherited disorders of connective tissue though it occurs only about once in every 10,000 to 20,000 individuals, according to a 2014 estimate by the National Human Genome Research Institute.

Physical features of those with the syndrome can include disproportionately long limbs, fingers and toes as well as a tall, thin body type.

From sixth to eighth grade, Jake Wilson sprouted from about 5-9 to 6-4, Ron said. After the spurt, Jake Wilson, who grew up playing the saxophone, shifted his focus to basketball, which he had only played recreationally.

"From there, I just fell in love with it," he said. "Twenty-four seven. I'm always watching basketball, reading about it or looking at statistics. I just fell in love."

For now, Wilson said he suffers no symptoms while playing.

His parents encouraged him to read articles about Austin, who later became a graduate assistant coach at Baylor. He also read about NBA player Jeff Green, who had an aortic aneurysm repaired as a player for the Boston Celtics.

"I was kind of like, 'How come he can [play]? He's in the NBA. What the heck? I'm just trying to play high school ball.' It was kind of like, 'Why?' "

"I feel like any other kid," Wilson said. "I feel better than any other kid because I'm getting up and down the floor faster than they are. I feel tired during the game, but doesn't everybody?"

Because doctors allowed him to play competitively last summer, Wilson turned heads for his dad, who coached in the Police Athletic League in Upper Darby. Wilson also played a few preseason games for Bonner-Prendie.

"He's a great kid and a natural born leader," said B-P coach Jack Concannon. "Obviously, it's heartbreaking that he can't play, but it's amazing that he's at every practice, in the gym all the time and encouraging the kids.

"Knowing what I've seen from him, I know that he's definitely a Division I talent."

Due to Jake's long arms, explosive leaping ability and soft touch, Ron Wilson said Division I coaches and AAU teams have contacted him about his son.

But . . .

"Quite frankly, it's more important to have my son around than risking anything else," Ron said.

Without Jake Wilson last week, the Friars earned their first Catholic League playoff win since 2011, upsetting Conwell-Egan, 49-47.

Wilson was a chatterbox on the bench, offering support, consoling a senior teammate who fouled out and filling and distributing cups of water.

"The team doesn't need another sad face sitting around," he said. "They don't need to see that. They need to be encouraged and motivated."

The Friars season ended Friday in the league quarterfinals against top-seeded Neumann-Goretti.

Whatever the future brings, Wilson is determined not to give up on the game he loves even if that means his relationship with it changes.

"I want people to know that I'm never going to give up on the game of basketball," he said. "I'm always going to work hard. Even if I'm not playing."