By Sam Wilson
Looking at Evan Palmatier, you might assume he’s just like any other high school student on the fields or court for Ellicottville Central School’s sports teams.
In many ways, he is, playing with his friends and notably memorizing handshakes or greetings with his basketball teammates during starting introductions. But for Palmatier, a senior playing football, basketball and baseball at ECS, his preparation isn’t quite like his peers’.
For every sporting event, he wears a special “hex pad” shirt designed with padding to protect his abdomen. In football, he’d add on a flak jacket under his shoulder pads for more support.
These safety precautions, in addition to his daily medication, make it possible for Palmatier to play sports with his friends and classmates despite a rare genetic liver disease called PFIC 3 — Progressive Familial Intrahepatic Cholestasis, form 3 — he’s lived with since a diagnosis at age 2.
His parents, Todd and Shannon, detailed Evan’s perseverance in a letter shared with the Salamanca Press and posted on social media at the time after his Senior Night basketball game. Their youngest son, Camden, also has PFIC.
“Early on, his prognosis was not good,” they wrote of Evan. “It was feared that he would need a life-saving transplant at 2 years old. After visiting a leading pediatric liver specialist in Cincinnati, he was put on trial medication. It has kept Evan’s liver from completely shutting down, and to this day, he has not had to have a transplant. Unfortunately, this rare disease is progressive and has no cure, so the prognosis for patients with PFIC is that they will one day require a liver transplant.”
His parents said the medicine “deals with excessive itching due to the build-up of toxins in his body that his liver can’t process correctly, has both an enlarged spleen and liver, and experiences digestive issues. He also has to be very careful when he gets the average cold and/or flu, as his immune system is weakened due to this disease.”
As a result, he often feels fatigued due to lack of sleep.
“Sometimes there’s nights where I don’t sleep or it might take me a little longer to fall asleep,” Evan said. “During the day, I get a lot more tired than other people usually are. I get a lot more drowsy, like you don’t have a lot of energy. It’s sort of hard … I have to work a lot harder to keep myself going because I just don’t have a lot of energy like other people do.”
What does Evan do when he wakes up and can’t find the energy to start the day?
“I just try to tell myself you’ve got to get up, there’s no way of getting out of it,” he said. “You’ve just got to do what I have to do and try to get through my day and work on getting through my day. I have to think about that and think about the positive things that I can do after I get up and go to school, and do all that other stuff.”
Doctors cautioned that sports, particularly football, could cause harm to his enlarged kidney and liver. But the family supported Evan playing sports he loved with his friends.
“I really do it because when my parents were told when they first found out that I’m not going to be able to play any contact sports, I’m not going to be able to be very active,” he said. “I feel like I’ve overcome everything they told me that I wasn’t going to be able to do, so I do feel like in the big picture I could be an inspiration for a lot of kids that have this.”
His parents describe his attitude toward the disease a “quiet grace.” He’s also earned respect from his coaches.
“He’s not one to come up and use it as an excuse,” ECS boys basketball coach Dave McCann said. “He battles through it and he works hard every day, through good times and bad. He’s been reliable, he’s been consistent in terms of being in attendance and giving us everything he’s got.”
Communication has helped make sure he’s ready for game nights. McCann said he checks with Evan’s dad to know the signs on his day-to-day health.
“I’ve known Evan since I had him as a student first in middle school and moving on up through the program,” McCann said “It’s something we’re aware of and it’s something he deals with every day. You can tell some days it has more of an effect on him than others, but to his credit, he’s still there and works hard and works through it. I’ve got a lot of respect for that.”
(Salamanca Press sports editor Sam Wilson may be contacted at firstname.lastname@example.org)