North Carolina’s Indo Jax Surf Charities Helps Kids With Batten Disease, Other Special Needs

A small North Carolina nonprofit organization, Indo Jax Surf Charities, has recently gained attention for its set of free programs to help children with Batten disease and other special needs build self-esteem.

Since launching these programs, Indo Jax has been featured in several media platforms, including American Way Magazine and TEDx Talks. Its founder is Jack Viorel, who started the group when he was a first-grade teacher at Saint Mary’s Elementary School in Wilmington, N.C.

“The school provided a program for kids born with AIDS,” Viorel said in a press release. “I thought about taking them surfing, believing this would be good for their self-esteem and physical issues. The program coordinator talked me into running three camps that summer.”

Beore the surf camp, many of these AIDS-stricken children had stopped taking their medication, knowing that they were dying, said Viorel.

“By the end of the summer, I knew we were on to something big,” he said. “The children started to open up, their skin issues improved, many of them went back on their medication, they wanted to surf again and be healthy enough to do it, and started talking about future plans.”

Sensing this could be a great success, Viorel retired from his 20-year teaching career and spent the next decade honing and expanding his charity for children with special needs. Today, Indo Jax Surf Charities uses the ocean as a classroom and surfing as a learning tool.

“We believe the ocean has unique healing properties with an ever-changing, unpredictable environment,” Viorel said. “Getting into the ocean and learning to surf, especially special-needs children, is a life-long lesson about stepping out of your comfort zone into unpredictability, and removing limitations. Everything in life has a bit of fear. We teach the kids that it’s okay to be afraid.”

Indo Jax now works in North Carolina, California, Nicaragua and India and different surf camps have specially designed programs for children with autism, visual impairment, certain cancers and neuromuscular diseases, among others.

“Our programs build higher self-confidence and teach a system children can apply to any situation or hurdle in the future,” he added. “They leave with a formula to be more successful, conquer more challenges, and the ability to deal with fear.”

The plan for 2017 is to assist about 1,000 children free of charge, using financial help from individuals as well as corporate donors and sponsors.

“We take on the responsibility of raising the money,” Viorel explained. “Most families with medically fragile, special needs or at-risk children are struggling to make ends meet.”

“I encourage anybody thinking about it to go for it,” said Eric Stanley, the father of 11-year old Jaylen, who is battling juvenile Batten disease. “Jack and his team are great. They’re very patient and know how to work with kids. A parent does not have to worry – they are one-on-one with the children, working with them and watching all the time.”

Batten disease may cause progressive visual impairment, seizures, muscle spasms, difficult sleep, speech and language decline and the general deterioration of fine and gross motor skills, which result in the overall loss of mobility. Ultimately, the child may become totally dependent on families.

Because there’s no cure for Batten disease yet, specialist symptom management and holistic therapy is essential to maintaining a good quality of life. Activities like surfing, which let kids interact with the environment, be in contact with water and have fun, may help increase strength and physical fitness as well as provide much-needed time for social interaction.

Indo Jax will also be the subject of a one-hour TV special, “The Hero Effect,” to air on the Oprah Winfrey Network. A premiere showing will take place Aug. 10 in Wrightsville Beach at Blockade Runner Beach Resort, one of the project’s main sponsors.

By Carolina Henriques