Getting Children with Serious Illnesses on the Water

Want to make a difference? Here's how one sailor goes about getting children with serious illnesses on the water...

Aram Nersesian doesn’t want this story to be about him. And that’s very telling of the sort of person he is. He’s the captain and owner of a beautiful, sturdy, 60-foot aluminum schooner called Heron. His home port is Solomons, and he splits his time between running charters and developing his photography business. That’s what anyone can find out about him from a simple Google search, but it doesn’t tell you about this man’s enormous heart. And it doesn’t tell you how he’s using his beautiful sailboat to help others.

On a hot July day, four kids and a handful of adults are onboard Heron getting a much needed dose of sunshine, fresh air, and Aram’s infectious smile. The group onboard doesn’t know each other. They met on the car ride from the Children’s Inn at the National Institutes of Health (NIH) in Bethesda, MD, where they are all staying. The Children’s Inn is a residential facility for families with kids participating in medical research studies at NIH. The kids here are all battling serious and often life-threatening illnesses. The sick kids and their brothers, sisters, moms, and dads often have to spend long periods away from home, away from friends, away from the everyday that the rest of us take for granted. Their days are usually a blur of appointments, exams, meds, and rest. Today, though, the Solomons skipper volunteers his time and boat to try and brighten the lives of these families. 

Captain Aram eases between setting an easterly course and hopping over to the mast to help a couple of kids raise the main, all the while snapping selfies with anyone who gets within a four-foot radius. He makes everyone feel at home and treats everyone to his generous enthusiasm. Feeling at home is what it’s all about at The Children’s Inn, according to Cristen Cravath, the family program and community outreach coordinator. Their mission is to create as much of a normal and fun atmosphere as possible for the families whose children are receiving treatment at NIH. 

“We have many diversionary programs, such as magic shows, arts and crafts, Bingo, music, clowns, anything to make the kids smile,” says Cristen. “This is the biggest trip we do: sailing on Aram’s boat.” 

It takes an alchemy of weather, schedule, and kids all feeling well enough to head out for the day to make these sailing trips happen. Aram started volunteering sails for The Children’s Inn about five years ago and tries to make one trip a month during the season. He often doesn’t know which kids will be coming until they arrive. Cancellations due to health issues can happen even just a few hours before the sail, after he’s already prepped the boat and loaded it with food and drink. But in his good-natured way, he just shrugs and says, “That’s how it goes sometimes.” 

This sweltering summer day, everything falls into place. The welcome breeze picks up and the kids get their first feel of the boat heeling over as it noses out of the Patuxent River from Solomons. After the boat is set, the captain asks16-year-old Amelia Litchfield to take the helm. Amelia is almost finished with treatments for a while and is excited to get back home to Texas and get her driver’s license. She spent the first part of the trip shy and serious, the oldest one of the kids onboard that day. Aram works his unbridled charm on her, and soon she is grinning ear to ear, wind in her long shiny hair, legs scarred but strong against the lean of the boat. She’s being treated for Proteus syndrome, but at this very moment she is not a patient, or the girl with the bone problems, she is just a curious teenager experiencing the thrill of sailing. Her father Marty beams at her side, visibly shedding stress as he watches her smile and steer the boat with a steady hand.

Tracy Martin is onboard with two little ones, nine-year-old Trevor and Kaylynn Swann. Tracy is not their mom; she’s their neighbor. Mom and Dad have used all their time off to tag team getting Trevor and his twin, who was not well enough to be onboard, to their treatments at NIH. Tracy volunteers her time to keep the boys together in the medical study for their rare tumor disorder Neurofibromatosis type 1. Tracy says often it can be just as difficult on the healthy sibling, sister Kaylynn. All of Mom and Dad’s time, money, and attention understandably go to the child who is sick. The well kids don’t get a normal life either because the family is tapped out. 

“This is an experience the kids may never get otherwise,” says Tracy. “The money that goes to medical expenses, travel to various doctors, time taken: it’s all used up for the twins. These families don’t get to take beach vacations or go on family trips. Every resource goes toward caring for the sick kids.” 

Kaylynn is all smiles during the sail, but Trevor is quiet and serious. There is a strength in his sea-blue eyes well beyond his nine years. Sitting on the leeward rail feeling the spray, he tells me proudly that he is not afraid of shots, and he is curious to learn more about sailing and how sailboats are raced. Tracy tells me that the kids notice the boats every time they fly from their home in Utah to Washington, DC. They always wanted to experience sailing. Eyes misty, she conveys how grateful they are to be out on the water. Over the phone their mom Jean Swann says the kids couldn’t stop talking about the sailing trip. “Going to as many doctor appointments as my kids do is not fun for them,” says Jean. “Everyone is under a lot of stress. To have an adventure like that is remarkable.”

“Many of the kids we bring out here have never sailed on a boat. And truthfully, they’re not all going to live that long,” says Cristen. “So experiences like this are so important.”

After the sail, Aram remembers one young man that he took out sailing last summer. He recounts how they became Facebook friends, and then he saw a post from the boy’s brother that he had passed away. 

“It made me realize I am just a flash for these kids. It feels great giving my time and doing this. I feel at the moment like taking them on the water will be the answer, will cure them. But then I know I am just a speck.” 

What Aram wants is for others to use their time and their boats and their talents to help these families. The Children’s Inn needs more folks to step up and volunteer or donate. “People can come to the Inn to volunteer, folks such as musicians or dancers. We also have a fundraising gala where a boat owner could auction off a three-hour sail or something like that,” says Cravath. 

The Solomons captain doesn’t want this story to be about him, but as of right now, he’s the only boat owner on the entire Chesapeake Bay donating time to the families at the Children’s Inn. Trevor and Kaylynn see hundreds and hundreds of boats from their airplane, and Aram hopes more of these sailors will find a way to bring a little joy to kids like them. 

For more information about volunteer opportunities at The Inn, contact Laura King at [email protected] or 301-451-9454.. 

~article by Cindy Wallach. Photos by Cindy Wallach and Aram Nersesian