Sun and big smiles as N.J. nonprofit takes kids with developmental disabilities surfing

Erin-Leigh VanOrden stood at the water’s edge, camera in hand and a smile on her face as she watched her two sons Saturday morning at the 57th Street beach in Ocean City.

She makes the two-hour drive from Edison every weekend with her husband Michael just so Carter, 12, and Dillon, 16, can do what they love — surf. They both have special needs and to watch them catch a wave she says is the “best feeling in the world.”

What gives them and so many other special needs individuals a chance to surf is the non-profit organization Heart of Surfing.

“Our mission is to create a positive experience. Not for them to stand up, not for them to become great surfers, but for them to have a positive, joyful safe experience in the ocean, and maybe do something that they wouldn’t have the opportunity to do otherwise,” said Cindy Fertsch, who along with her husband Bob founded the popular South Jersey organization in 2014.

Bob, an avid surfer, always took their son Jamie out on the waves and he loved it, explained Cindy. Jamie, who was diagnosed with autism at the age of three, loved the movement of the water and took pride in his surfing.

“He never stood up, but it didn’t matter. It made him feel good,” said Cindy.

But when she and other mothers with autistic children tried to register for a one-day surfing camp that travels around the country, the New Jersey event filled up quickly. That’s when the idea came to her to start Heart of Surfing.

“I remember thinking to myself ‘you know, Bob takes Jamie out surfing every day. We have a great surf community right here, we could do this.’”

Now in their seventh summer — they missed last year due to the pandemic — approximately 100 children and adults with autism and other developmental disabilities travel to a different beach every Saturday in Atlantic and Cape May counties from mid-June to Labor Day.

This past Saturday morning, the waters off of 57th Street beach were filled with surfers, parents and volunteers all laughing, smiling and cheering with every wave the surfers caught.

“Carter, stand up,” yelled VanOrden as she recorded her son on a wave. She discovered Heart of Surfing in 2017 and has been making the four-hour round trip ride ever since. Of her two sons, Dillon, who has Down syndrome, is the one who is obsessed with surfing.

He didn’t walk until he was three and half years old and now all he wants to do is stand up on a surfboard, she said.

“I never thought I’d live to see that day. I never thought Dylan would stand up on a surfboard.”

Chloe Byrne, 18, of Cape May Court House, has been surfing since 2015 and according to her mother Trish, is tenacious.

“She has Down syndrome, type one diabetes, Juvenile Arthritis and she doesn’t have any toes on her right foot,” she said as she watched Chloe stand up on a board while riding a wave.

“Aww,” she would soon scream after Chloe wiped out. Her daughter got right up laughing and without hesitation went right back to catch the next wave.

She got Chloe involved because she thought it would be something she would enjoy and make her not be so afraid of the ocean. Trish said Chloe started out a little nervous and fell down a lot, but now stands on the board most of the time.

“She’s very determined. She’s very inspirational.”

Trish said that surfing has helped Chloe’s confidence and helps keep her active and motivated. “She really just loves the water and seeing her friends and getting to hang out at the beach all day.”

Heart of Surfing is free and 100% volunteer driven, explained Cindy. Approximately 12-15 volunteers, which includes surfers and beach patrols, help during the three-hour event that runs from 9 a.m to 12 p.m.

Running in and out of the ocean catching up to her surfers was Claire Pinnie, 18, who will be attending Columbia University in the fall. Pinnie, who has been surfing since she was 10, has been a volunteer for four years.

“I think it’s one of the most rewarding experiences ever,” she said. Being able to get to know the new kids and help give them a new experience and developing bonds with the people and families she has known for years keeps her coming back.

And the parents know that without the volunteers, their children would miss out on these special moments.

“I’m just so overwhelmed by the generosity and love and caring and compassion and understanding of all the volunteers, especially the younger ones,” said VanOrden. “They don’t have to be here.”

In 2020, Cindy and Bob lost their son Jamie suddenly to a seizure when he was 25 years old and were not sure they could continue with Heart of Surfing. But, they said, they realized that there’s no better way for them to honor their son’s legacy than to keep working with families with autistic children and special needs.

They also created a Jamie Fertsch Memorial Heart of Surfing Scholarship that is given out to an outstanding high school graduating volunteer. This year the recipient of the $2,000 scholarship was Cole Young. Pinnie received the 6th Annual Liam’s Legacy Heart of Surfing Scholarship, also for $2,000.

For Cindy and Bob it’s all about providing a positive experience and seeing three hours worth of smiles.

“We get so filled up by the joy we see on the kids’ faces and the connections with the parents,” said Cindy.

Anyone interested in attending can sign up at heartofsurfing.org.

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Tim Hawk may be reached at [email protected]. Follow Tim on Instagram @photog_hawk.