HAWTHORNE, N.J. – Ethan Vander Molen buttons up his Eastern Christian (North Haledon, N.J.) baseball jersey and looks like one of a million boys playing a game he adores.
A few hours later, Vander Molen straps on the oscillating vest that keeps his lungs free from suffocating mucus and looks like a young man with cystic fibrosis.
He is both. He is more.
Vander Molen is a medical marvel, how many kids with CF are starting outfielders in North Jersey? And also, how many people stricken with the disease are a trim 6-foot, 175 pounds with well-defined arms and legs?
Ethan started his own YouTube channel in 2011, documenting the many surgeries (the hospital visits number at least 30) and medicines (200 pills a week) that a CF patient has to endure. His goal is to spread awareness of the disease, to let people know that just because he has CF doesn’t mean he can’t run, go to college by himself, vacation in the Adirondacks – “the best air I could breathe,” Ethan said with a smile – and laugh at his father’s jokes.
“I feel like I have been blessed to have this disease and still be this healthy and active, even though I do have my very low points,” said Ethan. “I would say that being able to have my faith through all this has been huge.”
There is no beating CF (a genetic disorder that impacts mostly the lungs and limits the ability to breathe over time), unless a cure is found, but there is having it, and not letting it define you. Ethan has figured out a way to live with it. He may wear the vest twice a day and take the nebulizer treatments, but he has never stopped living.
“We know we are in such a good area having access to the best doctors and the medications that we need,” said Ethan’s mother Sarah. “It’s not easy, but you just do it.”
Ethan John Vander Molen is the only child to Sarah and Jeff. Born December 22, 1998, his first few hours on Earth were rough. He was born with a perforated intestine and required three different surgeries to repair the issue.
“He was full term and he was seven pounds, 14 ounces, the biggest kid in the NICU,” laughed Sarah. “He wasn’t a failure to thrive, but that [intestinal] blockage kept coming up and when he was diagnosed with CF, we thought, you got to be kidding me….it was hard. It was really hard. Then we were just like, we’re all in. We will do whatever we have to do.”
Ethan went through years of pounding on his lungs to clear them, and then got his first vest when he was three. He still has it. The process is long and loud as it vibrates. He can’t do his homework while wearing it. It’s hard to read, even. He just has to sit there and absorb it.
He started school at Eastern Christian, because Sarah was an alumnus, and the family liked the private school aspect and the faith-based education side.
Already Ethan was into sports, soccer and basketball, but mostly baseball.
“It was recommended by the doctor to stay active,” said Ethan. “I think early studies with CF, people in the CF community thought it was best not to stay active, because you couldn’t breathe well, but then they realized staying active is good.”
Laura Gorter is the nurse at Eastern Christian Middle School. She guided Ethan through countless doses of medication and even IV treatments.
“Sometimes I would be like, Ethan, let’s call it a day and go home and rest, but those days were few and far between,” Gorter remembers. “He’s always been so mature, almost like an adult in a 10-year olds body, yet, he could relate to kids. I think his illness has forced him into a level of maturity that most kids don’t have.”
Today, Ethan is self-sufficient when it comes to medicine. He takes Kalydeco, a medicine that targets not just the symptoms, but CF itself. He says he’s as healthy as he has ever been.
Part of the reason for his good health has been because it’s baseball season (although, yes, his allergies do bother him). Ethan has been an infielder for the Eagles, but is a senior captain this season and playing in the outfield. There is nothing more he enjoys than tracking down a line drive, or roping a ball in the gap.
Ethan plans on attending Messiah College in Pennsylvania and studying Engineering.
There he expects to find another warm community like the one at Eastern Christian that has nurtured him. He can still watch Yankee games, and maybe join an Ultimate Frisbee game or two.
His bedroom walls are covered with Yankee paraphernalia. The first time he went to a Yankee game, Ethan was five and brought a sign announcing that it was his first visit to Yankee Stadium to the world. The family mistakenly taped the wrong television network, but heard from family across the country that he was broadcast just before the third inning.
Near the bed is the vest and the nebulizer. It’s close, but just a part of the room. Ethan’s bed is the top bunk. Maybe the air up there is a little fresher.
Every day starts early, 5 a.m. maybe 5:30 to put on the vest and start treatment, but it always starts the same way, with Ethan Vander Molen looking up, optimistic about what is to come.