WHEN LIFE THREW A CURVE

Coach balances baseball and family, raising son with CFC Syndrome

BY NATE BURAL

On Christmas Day 2008, life threw Bryan Conger the biggest curve he’s ever experienced—son Jacoby. As Tarleton head baseball coach, Bryan knows a thing or two about curveballs, but Jacoby’s arrival surprised him and wife Melanie, even after deciding to have one more child after 10 years because of “how much we loved being parents.”

Jacoby’s premature birth, inability to gain weight, sleeplessness and developmental issues affected not only Bryan and Melanie but siblings

Maddux and Kaleigh as well.

“We definitely weren’t expecting a Christmas baby,” Melanie says.

“He was about six weeks early, so we weren’t really prepared. We had our traditional cinnamon rolls ready for the next morning, and we were prepared to have our final

Christmas with just Kaleigh and Maddux.”

At 5 a.m., that changed. The family headed to the hospital.

Initially Jacoby failed to gain weight, never adding more than two ounces a week until an 11-ounce breakthrough in

February.

“He was labeled a failure to thrive for the first three months of his life,” Melanie recalls. “We tried everything to get him to eat. He would have milk pouring down his face, and we couldn’t understand why. They sent us to specialists for swallow studies.”

Melanie also picked up on Jacoby’s slow development.

“While visiting some friends with children when Jacoby was 3 months old, I noticed that one of the babies kept reaching out to grab her mom’s water bottle. I remember wondering why Jacoby didn’t try to grab mine. I wondered if there was something wrong with his vision, or if something more was going on.”

At 7 months, Jacoby began having seizures. Even with medication, they became more frequent.

Next stop was Cook Children’s Medical Center and a diagnosis of infantile spasms (IS).

When Life Threw a Curve “We were told there’s only one drug in America to stop IS,” Melanie says. “Bryan and I agreed to stop the seizures.” Adrenocorticotropic hormone (ACTH) required daily injections for eight weeks. “I remember the first shot,” Melanie recalls. “It wasn’t easy—from the numbing to the injection to the screaming.” By day two, the seizures had stopped, but the injections continued as a daily ritual, turning Melanie into more of a nurse than mom. “ACTH affects immunity,” she explains. “That required us to take extra precautions against germs. We’d come home and take showers before even touching Jacoby.”

Although Jacoby’s seizures stopped, the Congers realized that things would never be the same and, for seven years, they didn’t know what afflicted their son.

“Most head coaches are Type A personalities, and my family will tell you that I have a difficult time with the unknown,” Bryan notes. “I don’t care what an answer is because I can always figure out what to do, but how do you take action on what you don’t know? It taught me a lot. I started to change as a coach.

“Being the parent of a special needs child is the greatest thing ever,” he continues. “You don’t know how you’re going to do it, but you figure it out.”

While the family struggled with the unknown, so did doctors. Countdowns became a frequent terror for the family as birthdays brought more fear than celebration.

“Doctors kept telling us Jacoby wouldn’t live to be 1, then 2,”

Kaleigh recalls. “They would tell me it was time to say goodbye to Jacoby. But, it was so awesome to see him fight through and prove them wrong.” “We told the doctors to quit giving us a deadline,” Bryan says. “After Jacoby turned 3, for me, it was like he was a competitor. He competes in a different game than everyone else in the household, but he has the same drive and determination as his sister and brother. “When the doctors refer to the ‘Jacoby Conger Disease,’ it’s not exactly how you want your child to be known,” Bryan says.

Threw a Curve

Following intensive genetic testing of Bryan and Melanie, doctors finally identified Jacoby’s condition—Cardio-FacioCutaneous Syndrome—just before he turned 8. CFC Syndrome is a rare genetic disorder that typically affects the heart (cardio), facial features (facio) and skin (cutaneous).

Children with CFC may have relatively large heads, down-slanting eyes, sparse eyebrows, curly hair, areas of thickened or scaly skin and short stature. The condition affects fewer than 300 people worldwide.

“It was nice to have an answer, but it prompted a whole lot of research on our part,” Melanie says.

“The diagnosis made us realize how rare and special Jacoby is,” Bryan adds. “There are thousands of baseball coaches, but there are not thousands of Jacoby. He’s as special as you think he is.”

Because CFC Syndrome doesn’t impact life expectancy, the nightmarish countdowns are over.

“Now we have a path, so how do we fight back?” Bryan asks. “We push him more, especially since we know we’re going to have him longer.”

Bryan tells Jacoby, “The doctors say you can’t do this—‘Go compete, Dude.’ That’s his challenge every day.”

Jacoby is legally blind. He can’t communicate verbally or eat solid food, but he continues to improve.

“He understands when he’s at the baseball field though,” Bryan says. “He hears the bat hit the ball. He loves being out there. I’ve had complaints for playing the music too loud but, when Jacoby feels music, he dances and gets happy.

“He knows that when he’s at the baseball field, Dad’s there. Fences mean nothing to him. If there’s a game going on, he feels like he should be with Dad. Something as simple as seeing him put together a correlation—baseball field, Dad, go get Dad—is really neat. It’s simplistic, but it’s beautiful.

“I’m beyond blessed because of my entire family,” Bryan notes. “My wife does a tremendous job keeping everything together at home. Honestly, if she didn’t, I wouldn’t be able to coach. Coaching baseball is like a chess match. You have to be prepared for things and always several steps ahead. Continued on next page. 

Continued from previous page.

“Caring for Jacoby has taught me that I can’t do everything on my own,” he continues. “I ask for opinions more now than ever. I realize I need to lean on my assistants a little more. When you get players that can handle it, you lean on them more.

“The ability to learn from Jacoby and my family makes me a better coach. They’ve never given up or taken no for an answer,” Bryan says. “I hope the guys in my program never take no for an answer and never settle for less than what they’re fully capable of doing. Everyone is capable of being more.”

Thanks to Jacoby, Bryan is learning to take life one day at a time.

“Let’s give today everything we’ve got and, when that’s over, let’s wake up tomorrow and do it again,” he says. “It sounds cliché, but we never know if we have tomorrow.”

Meanwhile, Melanie continues to be a working mother, beginning a new position at Jacoby’s school this fall.

Kaleigh enters her second season of volleyball at North Central Texas College, where she’s studying for a medical career in hopes of helping others avoid the struggles her family has endured.

In 2015, a late-night conversation changed Maddux’s future forever. Just finishing his senior season at Stephenville High School, he was being courted by multiple major league baseball teams. Scouts had him graded as a third-to-fifth round draft choice, with some trying to talk him out of college to improve that positioning.

“He wanted to have a father-son conversation,” Bryan recalls, fighting back tears. “He reasoned that the education he’d receive at Vanderbilt would enable him to get a job to help take care of Jacoby. I remember thinking that no 18-yearold should make this the premise of their decision. He said, ‘You always told me that you have to put off the now for what you want most.’ What Maddux wanted most was to take care of his brother when his mother and I can’t do it anymore.”

Maddux, set to begin his third year at Vanderbilt, will again be eligible for the major league amateur draft, putting him one step closer to his lifelong dream of playing professional baseball.

“I can never repay my parents for everything they’ve done,” Maddux says. “My parents are superheroes, and I love them.”

And Jacoby? He’s just Jacoby.

“Jacoby doesn’t care if we win or lose,” Bryan says of the Tarleton Texans. “He only cares if I’m going to take him for a piggyback ride. He only cares if I’m going to keep his ’nilla wafer bowl filled up. He only cares if you do what he wants.

“As a dad and coach it teaches you an appreciation,” he says of life with Jacoby. “He just wants you to be you. At the end of the day, it’s just baseball. Now, when it is time for baseball, it’s everything you’ve got. Empty the tank. When the tank is empty, go home and empty the tank with your family. It’s not easy, but Jacoby’s taught me a lot more than I’ll ever teach him.”

Coaching Success

When Bryan Conger arrived as Head Baseball Coach, the Texans had endured five straight losing seasons.

In his debut campaign, they overcame a 7-11 start to qualify for the Lone Star Conference Tournament.

Conger led Tarleton into the national spotlight in 2011 with the team’s first national top-25 ranking. The 35-win season sent the Texans into the NCAA regional tournament for just the second time, the first since 1998 when his mentor, Coach Jack Allen, and the Texans reached the regionals. The Texans won national rankings in 2012, 2013, 2014 and 2017.

In 2013, Tarleton won its first-ever regular season Lone Star Conference Championship, with arguably the all-time greatest pitching staff in Texans history: all-conference pitching starters Pete Perez, Miguel Ramirez and Matt Buckmaster, with Britt Robertshaw closing games. Perez, Ramirez and Robertshaw all advanced to professional baseball. Conger was named conference Coach of the Year.

In 2014, Conger’s Texans won the LSC Tournament Championship, advancing to the NCAA regional for the third time in school history.

In his nine seasons at Tarleton, Conger has posted a won-lost record of 253-204-2, a .554 winning percentage.

After a stint as Tarleton pitching coach from 1996-99, Conger took positions at Lamar Community College, Cloud County Community College and the University of Utah, where he was pitching coach prior to returning to Tarleton.

He has had 34 players drafted by major league baseball, including current pitchers Stephen Fife and Brandon McCarthy.

A Stephenville native, Conger pitched for SHS and then Tarleton, where he was Comeback Player of the Year in 1994 and Most Valuable Pitcher in 1995. He earned his bachelor’s degree in speech communications in 1995 and, after two years pitching for Pine Bluff in the TexasLouisiana League, he returned to Tarleton to earn his master’s in education in 1999.

Looking for a way to get more involved with your alma mater? Want to stay connected with your fellow Tarleton Texans? Consider joining or forming an Affinity Chapter

The new affinity chapter program provides an avenue for alumni of student organizations or with any common Tarleton connection to create a chapter under the Tarleton Alumni Association umbrella. These affinity chapters set their own dues and can use the funds they raise as the chapter deems necessary. Affinity groups are a great way to connect with alumni who share your interests—and your love of Tarleton. See below for the affinity groups that are active now:

 Plowboys  Meat Judging  Rodeo  Corps of Cadets  Distinguished Alumni  Texan Stars

Ready to get started? Contact us!

Alumni Engagement

Box T-0570 Stephenville, TX 76402 (254) 968-9000 | www.tarleton.edu

Deja View

Stephen Howell, grandson of Tarleton’s 11th President E. J. Howell, stands by the university’s iconic World War I era cannon that he used to play on as a young boy. Howell recently visited the university, touring the Trogdon House with President F. Dominic and Dr. Lisette Dottavio, and the E. J. Howell Building, which formerly was the administration building and was renamed for the former president in 1997. The building now is home to the College of Education. Howell donated a collection of personal photos of Tarleton for the university’s archives.