Holding His Own
By Zach Rainey
As parents, they always want what’s best for their child, and more importantly, to have a better life than the parents had growing up. Whether that comes in materials , difference in lifestyle, or traumatic experiences, parents hope their child will never have to face what they did.
Alex Hetherman, a junior at Bartlett High School in the small town of Webster, Massachusetts, has had to deal with exactly what his father had to endure. Unfortunately, Alex had to do exactly that.
When Alex was born, doctors informed his parents that he had Ehlers-Danlos Syndrome.
The condition is defined as an inherited connective tissue disorder that is caused by defects in a protein called collagen. Common symptoms include elastic-like skin, abnormal wound healing, and joint hypermobility. The condition could also cause his joints to pop out anytime Alex attempt to pick up something too heavy.
When he and his father stretched their skin about three or four inches from their arm, that showed what they meant by elastic-like skin.
When Alex had his first severe dislocation, he was just 4-years old at the time. He was playing at a friend’s house and chased his friend up the stairs in play, when his knee just gave out, and the next thing he knew he was on the floor writhing in pain. He was rushed to the hospital, where he was diagnosed with a dislocated knee, realizing his parents’ worst fears.
His parents originally thought the dislocated knee would heal on his own, but after complications that included internal bleeding and swelling pushing the knee into an unnatural position, it was inevitable that doctors would have to operate to make sure it healed properly.
“I remember my parents being very supportive through all of my surgeries” Alex said. “Saying things like it’s going to be okay, just relax, the usual parent lines. It really made a difference though. It takes you away from it for a second, and even though you might think it’s B.S, hearing that from your parents really does help.”
Although they knew he had it, his parents had hoped he would be able to play as any other child and that he wouldn’t have to face the more painful parts of the condition until he was at least a little older. He’s not the only one in his family with it however, as both his father and little sister have the same condition.
Alex, who was born with hip dysplasia, has also endured multiple dislocations of his elbows and shoulders leading to countless trips to hospital emergency rooms.
When he was in middle school, Alex has had three open heart surgeries, the first in 2012, when he was 11 years old, the last in late 2013 to repair and replace his faulty aortic valve, due to another condition he has called aortic stenosis.
At Children’s Hospital in Boston, during his third open-heart surgery, Hetherman received a mechanical heart valve, meaning he would need, for the rest of his life, Coumadin, a blood thinning medicine to reduce the risk of developing blood clots.
There’s a link between Ehlers-Danlos and heart conditions, commonly affecting the aortic valve in the heart. The condition, Aortic Stenosis is the narrowing of the exit of the left ventricle of the heart. Those who suffer from EDS, are at a higher risk of heart conditions, particularly aortic stenosis.
It’s a road all too familiar for his father Shawn, as he was diagnosed with bone cancer at age 8, and found out he had EDS around the age of 40.
“I felt awful. Seeing him in that type of pain and go through everything he has, knowing he got it from me,” said Shawn. “I felt, and still feel terrible about it.”
During an incident in high school, Alex’s class had just finished. He reached down to pick up his backpack, lifted up, and his shoulder came out of it’s socket. Another dislocated shoulder. Alex was inconsolable, dropping F-bombs left and right. The teacher, who “you could tell didn’t know what to do,” said Shawn, tried to get Alex to at least stop the F-bombs, then got a few directed her way.
When his father arrived, Alex was still in pain and they were about to send him to the hospital, but in a semi-barbaric move that the Hethermans have gotten used to, Shawn counted to three and pushed his son’s shoulder back into place.
Fortunately, the condition still allowed Alex to be a normal kid growing up, with just a few sports he wasn’t allowed to play.
“I couldn’t play basketball and football,” Alex said. “Mostly the contact sports are what I couldn’t play due to liability reasons.”
Even though it’s not a contact sport, Alex can’t play baseball either, due to his heart condition. If a fastball hit him anywhere, he would bruise much worse than anyone else due to his blood thinners and give him a higher risk of something in his heart going wrong.
But with his love for sports Alex just can’t stay away. Even though he can’t play Alex has volunteered to be the manager for the basketball team, following in the footsteps of his father, who managed the basketball team at the same high school over 30 years before.
A sport that Alex is able to play, and currently is thriving in; is golf. Unlike basketball and baseball, there is obviously no contact with other players in golf, making the riskiest thing on the golf course picking up his golf bag.
“The worry is always in the back of my mind,” Alex said. Sometimes I let it get the best of me when I actually have time to sit and think about it, but in the moment when I’m doing things or on the golf course, I don’t really think about it.
Shawn introduced the game of golf to his son and Alex hasn’t looked back since. Golf being a sport of patience, Shawn knee Alex wouldn’t have to exert himself physically between his swings, keeping his heart rate down.
“I taught him the game, the fundamentals,” Shawn said. “But believe it or not, I’ve never beaten him on the course. But I take pride being able to say ‘everything he knows from the stance to the swing, he learned it from me.”
His dad shouldn’t take losing to his son personally however, as there aren’t many people Alex plays against that can beat him either. As just a freshman, he moved from the №5 slot out of six golfers that can compete in a match, to №3 by the end of the season.
“We had one kid that had moved up at this rate, but he still wasn’t putting up the scores Alex was,” Coach Barry Berthiuaume said. “Once Alex came in as a sophomore and showed he had improved even more, it was obvious he was the № 1.”
By the start of his sophomore season he earned the №1 spot, finishing among the best at his matches, earning seven medalist honors. This year as a junior, he was a nine-time medalist, finished second in the Conference Championship with a 76 and tied for fourth in the regional championship and finished eighth in the state championship.
“Despite all of his pain, discomfort, limitations, fear and uncertainty, he has endured and continues to be strong,” athletic director Tony Paronto said. “He always displays a positive attitude and is not given to self-pity. He is motivated and mature beyond his years.”
One thing Alex doesn’t want, like Paronto said, is pity. Even though he has limitations on which sports he can play, he excels on the golf course, being one of the hardest workers in Bartlett Athletics. He consistently out-plays kids that are bigger and stronger than him, and at 5-feet, 7-inches tall, that is the case a majority of the time.
“Through all of Alex’s health issues, he has not missed a single match or a day of practice during the four years I have coached him,” said Bartlett coach Barry Berthiaume. “I’ve been coaching youth sports for 27 years and he’s the most dedicated player and one of the most coachable kids that I’ve ever had. He’s been our best player and team MVP since ninth grade.”
This doesn’t come as a surprise, as Alex got a job working at one of the local golf courses, letting him get a free round in every day, and if that weren’t enough, he would sometimes ask his father to take him out a second time that day and to play against his old man.
“It’s gotten to the point where I know I’m not going to beat him,” Shawn said. “When he was younger, I at least had a chance, now forget about it. I’ll drive the cart, maybe have a cold one or two while he’s out there and I’ll just watch.”
One way Alex is at a disadvantage however, even in golf, is that he can’t work out. His father described his son’s situation as, “anything that would make himself grunt is pretty much a risk.” This means he can’t work out and lift heavy weights to make stronger, but would have to do considerably more reps of light weights than his peers would trying to put on the same amount of muscle.
Alex played it coy when talking about interest from any colleges to play golf and said that there was “nothing official” and that he was “still looking around,” but that he wants to go somewhere down south to be able to play year-around.
Shawn steps outside to examine the roads. It had recently snowed over two feet and he was surveying the plow job that had been done on the street. One limitation for his son, is that something he can’t do is shovel snow, leaving it for him even though he has the same risks of something going wrong with his joints as his son.
Shawn said that Alex had actually received interest from schools, including the university of Tampa and Jacksonville University, with Alex adding Elon and Davidson University saying they want to talk to him on the phone or possibly come up there to Massachusetts. Elon on Davidson are both down south in North Carolina, fitting the description of being able to play all-year around. Alex also thinks it would be “cool” if he was able to play college sports at the same school as popular basketball star Stephen Curry.
“It makes me proud,” Alex said. “It’s a big accomplishment for both me and my dad, the work we both put in. We’ll be out there for six hours sometimes, and that’s after he works. I couldn’t have done it without him.”
Through all hardships and struggles, especially the ones the Hetherman’s have faced, between Alex and his little sister who also has EDS, they deserve a break, or a getaway, and that’s exactly what will get. The Make-A-Wish Foundation, funded through individual contributions, corporate donations, foundation grants, planned gifts, and chapter fees and assessments. The foundation gave the Hetherman’s an all-expenses paid weeklong trip to Florida due to Alex’s serious heart condition. There, Alex and his father will have a hotel right on the course where the Honda Classic was held this year, called The Champion Course at Palm Beach Gardens, is where well-known golfer Ricky Fowler took home the championship this year.
“It feels very cool,” Alex said. “I plan on just taking it all in; the feels, the ins and outs of the course and most important getting to spend it with my dad.”
Alex still has a year of high school to complete before he commits where to go for the next chapter of his life, but one thing is for certain, he’ll never forget the beginning and how just how rough it looked and felt at times. While it sure wasn’t a typical route to this point in his life as a Division I NCAA prospect, he wouldn’t have it any other way. It helped him build character and realize there can be worse things in life than losing a game.