Playing for Jack

Maria S. Young

To see all of the bad that goes on in the world on a daily basis, all one has to do is open the Twitter app with the tap of a fingertip. Click on a news website, and the top stories are likely to involve war, mass shootings and whatever else may be plaguing society that day.

The bad is sometimes so ubiquitous that it clouds the vision and makes the good harder to see, but all one needed to do to be reminded that the good exists all around us was glance at the baseball diamond at Campbell’s Field on Saturday morning and early afternoon.

With the Ben Franklin Bridge looming like a giant spectator in the backdrop, the Philly Blue Sox 16U baseball team took the home field of the Camden Riversharks to give back to a community member who needed help. They could have been down the shore soaking up the sun on a beautiful but hot summer day; instead, they played a baseball game for little 4-year-old Jack Smith.

Jack was born with a rare genetic disorder called ectodermal dysplasia, which affects the development of hair, teeth, nails and sweat glands. It’s not a single disorder, but rather, a group of syndromes that affect multiple areas of the human body; in all, there are more than 150 identifiable syndromes of the disorder, for which there is no cure.

“He’s 4 years old and already has a set of dentures,” Jack’s father, Matt Smith, said. “His hair is real sparse, eating is tough and we’ve always got to watch out for the heat. The air conditioner is on in our house probably nine months out of the year. He’s also got skin problems from not being able to sweat; his ears get red and his feet go on fire, but other than that, he’s a normal 4-year-old boy.”

The good news for Jack is that as long as he is aware of the limitations brought on by his disorder, he should be able to live a long life with it.

“He’ll lose his hair, and teeth-wise he’ll have many surgeries ahead as he continues to grow,” Matt Smith said. “Heatstroke is our number one worry, but as long as we can control that, he can live to be 100 … and he will.”

That said, Jack’s life has been altered by his disorder, meaning he has to be ultra-vigilant of things most healthy people take for granted. So when the Blue Sox, a team that operates out of Sluggersville Philly on Blue Grass Road, announced plans for a charity game over the summer, they began to search for a target they could give back to.

The Blue Sox landed on Jack through a web of connections, which is often how things sprout to fruition in Northeast Philadelphia. Two players on the Blue Sox 16U team, Frank and Nick Conway (a junior and sophomore, respectively, at Father Judge), hatched the idea when they were asked by coaches to nominate someone in the community whom the Blue Sox might be able to help out. The Conways’ father, also named Frank, has known Matt Smith for more than 20 years. The families and their children are close, and Matt Smith coached the Conway children when they were growing up playing sports at Rhawnhurst A.A.

“They asked if we were on board, and absolutely we were,” Smith said. “What it does, it creates awareness. A lot of people don’t know about this disorder; they look at Jack and think he might have cancer because of his hair. I heard a lot of parents today asking questions, and the greatest thing is to create that awareness and get the word out. We’re a family from the Northeast, and there’s really nothing like it … everybody knows someone who knows you. It’s just a wonderful thing. The Blue Sox not only take young men and turn them into great ballplayers while preparing them for high school and college, but also to look out for people off the field.”

“Jack is a great kid with a great personality,” added the elder Frank Conway. “It raises awareness for something I wasn’t familiar with and gets the word out to people that it’s a disorder you can live with. Everyone looks out for each other, because that’s what the Northeast is all about. If people can help, they will. I want my kids to have the same experience I had growing up here; the neighborhoods might be different, but there are still people around who take pride in where they come from and help to give back to people who need it.”

Matt Smith and his wife, Marie, are vigilant in raising whatever money and awareness they can for ectodermal dysplasia. They are active members of the National Foundation for Ectodermal Dysplasias and travel around the country to contribute money, knowledge and awareness while conferring with others affected by the disorder. The Smiths take what they learn about ectodermal dysplasia and use that information to try to aid others who are newly impacted by the disorder. Next week, they’ll be in Colorado Springs for a conference, with the money raised from Saturday’s game, where Jack threw out the first pitch.

“Sluggersville will be known at the conference for doing this,” Matt Smith said.

Mike Zolk, the lead instructor at Sluggersville, takes pride in the fact that his organization is so involved in giving back to the community.

“Our role in the community is mainly through youth camps throughout the year,” he said. “We do a Christmas drive where we pick a family who is down on their luck and give them a great Christmas. We have charity games with the Blue Sox police team, as well as with the teenagers, as we did today. We also do a champions clinic each April the day before Easter, which is a camp for kids of all different handicaps and disabilities.”

For Zolk and all the players and coaches of Sluggersville, it’s about more than just playing the game of baseball; it’s about using baseball to turn young kids into structured men, ones who realize the importance of selflessness. The teams featured kids from all different high schools — Judge, Wood, Neumann-Goretti, Penn Charter, Germantown Academy, Roman, Abington, Central, MaST Charter and Friends Central, to name a few — but the overall message remained the same.

In actuality, the game wasn’t much of one at all, with the Blue Sox Blue team scoring 19 runs and prevailing easily over their Blue Sox White counterparts. But in the end, none of that mattered.

“To me, it wasn’t about a baseball game at all,” said Eddie Tomaselli, a coach on the losing side. “It showed our kids the importance of realizing how lucky they are to grow up healthy. They all rallied for Jack, and it was an eye-opening experience. Nobody on our side was mad about the score. They realized what they were there for, and that’s touching. It’s the way I was raised, and it’s the way we want our kids to be raised, to step up and help each other out. If you don’t have that, then the entire community fails. It’s neat to see these kids change, and knowing you had a part in it, it’s just very satisfying to me as a coach.”

After the game, Jack posed for pictures with all of the Blue Sox players, coaches and parents. He was the star of the day, but really, everyone on the field stood out.

“It’s an unbelievable, great feeling,” Matt Smith said. “And I’m not surprised at all, because it’s Northeast kids and their parents. It’s the way we were all brought up; if the rest of the world was brought up like the Northeast, it would be a much better place.” ••

Maria S. Young

Jack of all trades: On Saturday morning at Campbell’s Field in Camden, the Philly Blue Sox 16U team gathered for a charity game to benefit 4-year-old Jack Smith. Jack was born with a rare genetic disorder called ectodermal dysplasia, which affects development of hair, teeth, nails and sweat glands. There is no cure for the disorder, which Jack’s parents, Matt and Marie, travel around to cities across the country to raise awareness. MARIA S. YOUNG / TIMES PHOTOS