Competing and Surviving with Marfan Syndrome

brendan duball By Brendan Duball

There is less than 200,000 known cases of Marfan syndrome in the US per year, about 1 out of every 5,000 people suffer from Marfan syndrome. According to the Marfan Foundation, Marfan syndrome is “a genetic disorder that affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly.” Marfan syndrome essentially withdraws the structure of fibrillin-1, a protein essential to the keeping the connective tissue healthy. Marfan syndrome is the same condition that one-time NBA Draft hopeful Isaiah Austin suffers from, a condition that ended his own dream of being a professional basketball player. One of those 5,000 is my best friend and former teammate, Zach Jones. While Zach’s basketball career was short-lived, the memories during his time playing will last forever.

In Zach’s case, Marfan syndrome impacted his heart directly, he suffered from aortic enlargement; the vein that carries blood to the rest of the body essentially inflates and can end up being life-threatening. Zach Jones knew he had Marfan syndrome before his AAU basketball career began. His doctors detected the condition around the 6th grade, but it was a very mild case of Marfan syndrome, one that wouldn’t derail his basketball career, yet. “I knew about the condition before I even tried out for the team, it’s a genetic condition in my family, my mother also suffered from Marfan syndrome. I knew it wasn’t exactly life threatening at this stage of my life, it was a mild case, the doctors didn’t express any serious concern, and I really wanted to play highly competitive basketball.” According to the Marfan Foundation, the severity of the condition can get worse as the person ages; “Some people fewer features when they are young and don’t develop aortic enlargement or other signs of Marfan syndrome until they are adults.” While Zach knew he suffered from a very mild case of Marfan’s, it wasn’t serious enough yet to keep him from playing. Zach played for the Richmond-based AAU team Surge and competed against some of the best basketball players in the Metro area, including Benedictine graduate and member of the Final Four Syracuse basketball team, Michael Gbinije. “My first year of AAU ball was the most enjoyable, the best year for me, mentally and physically” says Jones. “I got to start, I had a few 15, 20 point games, I developed my three point shot because my coach refused to feed me in the post. It was sort of a learning experience, developmental year for me.” Standing at 6’8, Jones towered over opponents and teammates alike, “I was on the taller end of the entire league; I used that to my advantage.” Little did he known that his first season of AAU ball would end up being the peak of his short-lived basketball career; “I played with some really good players, some are now playing at D2 and even a few mid-major D1 schools. We made the state semifinals but ended up losing.”

Near the end of his first year, Jones visited the doctor’s in what he thought was a normal checkup. He learned that this condition had worsened, “Doctors advised me not to lift weights or do any intensive workouts. So I wasn’t really able to keep up with the other players who were getting taller, stronger. My height wasn’t really much of an advantage anymore.” But still, doctors didn’t tell Jones he couldn’t play basketball anymore, “I was still able to play, but this was where it all started to go downhill.”

In his second year of AAU basketball, as if his luck wasn’t already bad enough, Jones was involved in a freak accident where he was electrocuted in a live game; “I remember seeing one of those green power boxes you see outside, like behind your house or something, inside the actual gym near the scorer’s table. So I’m kneeling down next to the scorer’s table and accidently put my hand in a puddle of water coming from the other team’s cooler which of course is right under the cord leading to the power box. The lights flickered, scoreboard went out and they had to stop the game.” While it might’ve been smarter to sit the game out, Jones continued to play; “It felt like my legs sparked when I jumped after it happened. I got like three blocks after the shock. It literally put a spark under me.” The second season resembled the first in many ways for the team, but not so much for Zach; “I felt my body catching up to me. We had another center named Jamal who ended starting ahead of me. The team was getting better, but I felt sort of stuck behind.” The Surge ended up improving their regular season record, but lost in the state quarterfinals.

Unfortunately, this wasn’t the end of the continuous bad luck for Jones. In his third and ultimately his final year of AAU ball, another accident finally put an end to his basketball career. “I had my entire family in the crowd, even my grandparents; I was driving in the lane for an open layup, got pushed in the back and ended up landing chest first on the ground. I felt really strange after the game. This was sort of the final straw for my parents; they let me know that this would probably be my final game.” And thus, after 3 short seasons of AAU basketball, it was over just as quick as it started. As his opponents got stronger and as the game became more physical, playing basketball simply became too dangerous for Zach to continue. “I remember going to another doctor’s appointment shortly after that and I knew what I was about to hear. My doctor told me a blow to the chest could be life ending, he said he couldn’t sign a physical form to allow me to play basketball again. Basically my condition had grown to a severe case of Marfans. I remember crying on the way home. First time in my life that my dreams were crushed, but I knew it was in my best interest to stop playing.” Zach had always been told that his condition hadn’t gotten severe enough to completely derail his playing career, so once he was told definitively by a doctor that he should stop playing, it was crushing. This was the first time in Zach’s life that he would no longer wake up and think about the game he grew up playing.

While his career came to an abrupt, worrying end. Zach doesn’t have a lot of regrets during his time playing basketball. “I have a ton of memories that will stick with me for my entire life. One in particular was when this team isolated their shortest player against me, they were like taunting me, he drove the right side of the baseline and I smacked the hell out of the ball. I got way to hype and began jumping up and down and the crowd was like ‘woah this guy is crazy.’ I didn’t care; I smacked the shit out of that ball.” The percentage of people that get the privilege of playing collegiate sports is pretty slim, so for everyone else, AAU and travel sports are likely the peak of their athletic careers. Anyone that talks to Zach about his basketball career can see how his eyes light up when he reminisces about his playing days. Now as we’ve gotten older, reminiscing about playing competitive is the ultimate nostalgia trip. While he still has his health to be thankful for, Zach often wonders what would’ve happened had he picked a different sport to pursue; “If I had known earlier about how severe my condition would’ve been, maybe I wouldn’t have chosen basketball. Maybe I would’ve focused on a less physically intensive sport like golf. If I had known earlier, it would’ve been interesting to see what path I would’ve taken.”

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