Westhampton Beach Senior Gavin Vander Schaaf Courageous on and off the Court

Gavin Vander Schaaf was 7 years old when he woke up one morning and couldn’t get out of bed. He knew he’d rise with the usual headache, soreness, the pins and needles, double vision and dizziness — all symptoms related to a condition that required brain surgery at age 5 — but he never thought the pain would grow so severe that he wouldn’t be able to stand.

That day thrust the current Westhampton Beach senior into a long, grueling battle to not only walk again, but on a mission to change his own way of thinking — an undertaking that has since culminated in a 2020 U.S. Tennis Association Eastern Junior Courage Award bestowal and 2022 “Live to Give” feature on The Tennis Channel.

“What pushes me is that I keep thinking if even just one person hears my story and is inspired to change his or her life for the better, that’s enough for me,” Vander Schaaf said. “My whole life is about trying to help others through kindness. This has been a life-changing experience, and it’s shown me that I could make a bigger difference than I ever thought I could.”

But the now-17-year-old didn’t realize he was born different from other children. While Vander Schaaf's siblings and friends would run around playing tag, the East Quogue resident would scoot across the floor — using his arms to propel him forward because it hurt too much to walk.

“The pain was excruciating,” Vander Schaaf said. “I can’t remember a time where I didn’t have a headache or that my legs didn’t hurt, but I always assumed that every other kid had the same pain.”

Bumpy car rides only exacerbated the throbbing on the infant’s spine and the front, back and top of his head. The discomfort eventually led to difficulties swallowing food. Some days, Vander Schaaf wouldn’t be able to stand straight or lift up his head. As a toddler, he would slump in the corner of a classroom or lay down on the front lawn. Occasionally, his head pain would be so severe it would cause a high fever that would come on fiercely and last for hours.

“Nights were difficult, and I did my best to soothe him as he squirmed until he cried himself to sleep,” his mother, Regina, said. “I still grapple with the guilt that for years I took him with me on those bouncy train rides to New York City while I finished schooling for my master’s degree.”

His older sisters Lily, 23, and Marin, 21, vividly recall their brother once throwing up a cup of blood.

That’s when his mother knew it was time to see a specialist, who diagnosed Vander Schaaf with Chiari malformation with basilar invagination — where brain tissue extends into the spinal canal — and told his family he’d need his first brain surgery.

“All those years that we prayed for an answer, we definitely didn’t want it to be that he needed this urgent brain surgery. But in a way, it made sense,” Regina Vander Schaaf said. “We were simultaneously scared to death and hopeful that he would finally have some relief.”

Her son, who missed seven months of first grade, went back to school soon after, but, she admits, may have returned too quickly. She’d soon be told he’d fallen during recess, and that a friend accidentally stepped on his head. Vander Schaaf said he heard something that sounded like glass shattering. He’d even ride his bike, and still, felt this pressing against his neck that he said felt like being strangled.

Eleven months passed before an MRI revealed Vander Schaaf’s brain tonsils descended, pressing down far enough into his spine that it blocked the flow of his spinal fluid. This meant he’d need another, more invasive brain surgery — immediately.

During that second surgery, where they burned his brain tonsils, cut layers of connective brain tissue known as dura matter and removed a great deal of his skull and rungs in his spine to make room for his brain, an inch of scar tissue was discovered. This had been obstructing his airway, causing sleep apnea while also being responsible for his neurological symptoms.

Vander Schaaf’s health was also adversely affected by other conditions, including a late Lyme disease diagnosis and concurrent mononucleosis, resulting in cervical lymphadenopathy — an abnormal enlargement of lymph nodes in the head and neck — and a slew of other medical problems. It was also later discovered that the teen had Celiac disease that, along with complications from his second brain surgery, produced an “autoimmune crisis,” causing malabsorption, vitamin deficiencies and excruciating neuropathy. His central sleep apnea still causes insomnia and chronic fatigue.

“It was definitely uncomfortable, and it was hard when all of these kids were out there running around, and I couldn’t,” Vander Schaaf said. “I felt separated from the rest of them.”

He did feel more connected, though, when competing with his Little League baseball team. Vander Schaaf loved sports, but especially baseball. His grandfather was a diehard Yankees fan, and his father, Kevin, passed down that adoration. Vander Schaaf would take to the batter’s box for the youth team, but always needed a runner.

“I wanted so badly to participate, but couldn’t, really,” he said. “So I always had a tentative relationship with it.”

He’d already given up so much of what he loved, like his Nintendo Wii, which the up and down movement from playing caused him a good deal of grief — bruising around his eyes and head pain for days; and gone through years of modifications like using neck braces, reclining in car seats, propping books on pillows so they were at eye level and adjusting to sleeping sitting upright. And then came that frightening morning in second grade when Vander Schaff said his legs “betrayed him.”

“For anyone who suffers with chronic pain, you know it’s a monopolizer,” his mother said. “It affects and underpins everything — every thought, every action or inaction. Pain consumed Gavin, and that consumed us — chewed us up and spit us out.”

So then, baseball was gone, too. But after six straight months of being exclusively wheelchair-bound, Vander Schaaf took his first few steps inside his doctor’s office with his friends by his side. He vowed he wouldn’t rest on his wheelchair again, but said he continued to use it more often than he’d like to admit.

“It became a crutch,” Vander Schaaf said. “I think there was something mentally holding me back in the end, and I just needed to rip off the Band-Aid and try to stand up — put away my fear of falling down again. I knew what I was missing out on, and that helped me press forward.”

By the summer heading into seventh grade, Vander Schaaf was feeling well enough to toy with the idea of returning to the baseball diamond, but realized he’d be too old to compete on his Little League team. His sister Melina, who was also diagnosed with Chiari malformation later in life, had been working at Westhampton Beach Tennis and Sport, where she picked up a tennis racket for the first time, and told her younger brother, now also employed by the club, that she thought he’d enjoy it.

“I was nervous, because I’d had experiences where I tried to do things and it would put me on the couch for a week in excruciating pain, but she said she’d play Pokémon with me if I didn’t like it,” Vander Schaaf said, laughing. “That sounded like a fair deal to me.”

As it turned out, he not only enjoyed playing, he was good at it.

“Tennis gave me the first semblance of control,” Vander Schaaf said. “My whole life before tennis was regulated by pain, and there wasn’t much I could do to fight it. When I stepped onto the tennis court, I felt like I was grabbing the reins. I was able to dictate my life — grab a point and take the small victories. I transferred that to the rest of my life.”

Vander Schaaf ended up also competing with the middle school baseball and volleyball teams, and continued to play volleyball and tennis as a freshman, but because he was immunocompromised, decided to quit playing volleyball as a result of the pandemic. This fall, he returned to the volleyball court to compete with his best friend of 16 years, Declan Kerns, one last time. Vander Schaaf said it was a full circle moment for him.

“There’s nothing like ending your high school career how you started it — with your best friend,” Kerns said. “Gavin, to me, was always just like any other kid. All we wanted to do was play together. Throughout his life, he has been through absolutely terrible things that no kid our age should go through, and he never threw his problems onto anyone else. He always battled through them. Gavin is truly one of the strongest individuals I have ever met.”

Entering his senior season with the tennis team this spring, Vander Schaaf has now, for the last two years, been named a captain, secured the first singles spot and earned All-County honors. He even won his consolation match, 6-3, 6-4, to place third in Division IV last season.

“Tennis built up my confidence and helped me push through that pain,” Vander Schaaf said. “This high of being able to control something was worth going through all the pain to get there.”

His mother said she nearly threw up watching him play and navigate his discomfort, but she also knew he was making up for lost time.

“We’d beg him to rest, but he explained he’d be in pain either way, and being out on the court distracted him and made him feel good,” she said. “I often say watching Gavin go from a weak, pale, frail shell of himself to getting stronger every day — seeing that glimmer of the light in his eyes shine a little brighter — was powerful.”

Matt Reed, Westhampton Beach’s boys and girls tennis coach, said he’s astonished by what this athlete has been able to achieve. But before he noticed Vander Schaff’s tennis talents, Reed saw his elite abilities in the classroom. The two first met when he was co-teaching the student’s ninth-grade English class.

“It didn’t take long to realize that the motivation, focus and intelligence of the young man in front of me was superior,” the head coach said. “Those traits are extremely transferable and important to tennis, and lead to a high IQ on the court. While those traits are all great to have, at the top of my list in regards to importance in life is that he’s a good and kind person.”

Vander Schaaf, an Advanced Placement Scholar with Distinction, was named a 2023 National Merit Scholarship Program semifinalist for his PSAT placement, and earned a New York State scholarship for academic excellence thanks to his high GPA and Regents test scores. Most recently, Vander Schaaf was honored by the Board of Education for being among the less than 0.5 percent of ACT test takers to score a perfect 36 on the exam, for which the current average score nationally is a 21.

“Gavin is an amazing athlete, student and friend,” Kerns said. “He in one of a kind, and I know he is going to do amazing things for this world.”

But Vander Schaaf already has. The senior is also co-president of the Interact Club, a member of the Youth to Youth executive board and a singer in the chamber choir. Outside of school, he volunteers for the nonprofit organization Second Serve, for which he acts as the national director of human resources, and is senior leader for the Rotary Youth Leadership Awards Program.

“Most people would not be able to do it, but when you’ve been through as much as Gavin, that changes your mindset on life and motivates you to accomplish as much as you can,” Reed said. “He also has a tremendous support system that wants the best for him, which can’t be stated enough. I’m so proud of what Gavin has accomplished in his young life, and I look forward to seeing what more he will accomplish as time goes on. The ceiling for Gavin is very high.”

Vander Schaaf, who has applied to Duke and Princeton University and the University of North Carolina, is looking to major in medicine or secondary education. The senior said while he wishes there were even just 25 hours in a day, he wouldn’t change a thing, because for him, it’s all about paying it forward.

“I know what it feels like to have nothing and nothing to do, so I jam-pack my days. I wouldn’t have it any other way,” Vander Schaaf said. “I was the recipient of a lot of kindness and a lot of help across the worst of my health journey and beyond, so I feel like I’ve only just begun to pay back the debt that I owe. It fulfills me so much to know I’m giving back the kindness I’ve received, but I want to keep doing what I can to honor that.”

His time with Second Serve led him to a fundraiser to build a fresh water well at an orphanage in Africa. It was with the help of his Westhampton Beach Tennis and Sport manager Bobby Lum, who donated his pickleball courts to the cause, that Vander Schaaf was able to do it.

“If he’s trying to do something and it’s going to benefit other people, he usually comes by and asks me. I don’t even question it,” said Lum, laughing. “I’ve known Gavin since he was 12, and it’s been a pleasure to watch him grow and develop — I love the direction he’s going in. It’s an honor to be affiliated with him in any way.”

Tito Perez, general manager of Setauket-based Long Island Health & Racquet, whose son bested Vander Schaaf in a youth tournament soon after he’d first picked up a racket, has also watched the senior’s skills grow. Perez nominated Vander Schaaf for the Courage Award recognition, and welcomed the athlete into a group of high-level competitors that propelled the athlete to his All-County status.

“He’s a great example for anybody,” Perez said. “He’s a very good tennis player, especially considering his circumstances. He’s very intense. He’s very passionate. But for him, it’s about perseverance. It’s about learning a lesson — to keep working for your dreams. It doesn’t matter how difficult your life is, you can keep moving forward and be successful.”

Vander Schaaf said the honor helped him feel seen, and added if his younger self could see where he is now, he’d be stunned.

“I still find it hard to believe that I’m here where I am now,” Vander Schaaf said. “I used to try to make an impact by holding the door open for someone or smiling at somebody I didn’t know, and this has encouraged me to get out there and do bigger things — to help on a grander scale. This has been an honoring and humbling experience, and I want others, if there’s any pain or strife or adversity that you’re going through, to use it as a source of fuel. I want someone who is going through what I went through to see this and believe in him or herself. I never really thought I’d amount to much, but if little Gavin could see me now …”