Nivala sisters organize benefit swim on Martha’s Vineyard

— Photo by Susan Safford

Swimming sisters Rebekah and Kaija Nivala of Vineyard Haven had been planning for the challenge all winter. The hundreds of laps and thousands of strokes were all in preparation for a four-mile swim from West Chop to Woods Hole this summer.

Although the undertaking was daunting, the girls believed that the only obstacles that could possibly hold them back would be themselves. However, when a great white shark was spotted a few hundred yards off Gay Head in early June, they decided to cancel the swim.

In a phone interview with The Times, older sister Rebekah said that while they were disappointed, they were still hopeful that they could “do something major this summer.” In their search for new inspiration, they came upon the moving story of a 6-year-old boy named Jesse.

A Rhode Island native, Jesse suffers from eosinophilic esophagitis, a form of eosinophilic disease. The digestive system disorder is estimated to affect one in every 1,000 children, making them susceptible to developmental delay and nutritional deficiencies. Because of what the disease does to Jesse and other sufferers’ digestive systems, it is only safe for them to eat certain foods, like potatoes. Nearly every other food source can prompt a dangerous allergic reaction, so they must gain additional nutrients through expensive protein-enriched formulas.

“Jesse represents all the children suffering from this disease,” Rebekah said. He is the hopeful and smiling face of a cure for a disorder that is practically unknown outside of the medical community. As unfamiliar as the disease is at the moment, however, its prevalence in industrialized countries is increasing due to worsening environmental conditions.

When Rebekah and Kaija learned that there are a number of eosinophilic disease sufferers on the Vineyard, they were inspired to combine their love of swimming with a service project. In a matter of days, their swim fundraiser, Swim for Jesse, was born.

With just over a month to plan, Rebekah and Kaija got to work. They set up a website (, contacted local newspapers and television stations, and printed flyers. They finalized event details, deciding upon 50-meter, 200-meter, and 1-mile open-water swims. They spoke with family, friends, neighbors, and even strangers, none of whom knew of the deadly disease.

In the face of a number of obstacles, they followed the words attributed to the pseudonymous Ambrose Redmoon: “Courage is not the absence of fear, but rather the judgment that something else is more important than fear.” With the young faces of Jesse and so many others in mind, they carried on tirelessly, reaching out anywhere they could for support.

Under a brilliant blue sky this past Saturday morning, Rebekah and Kaija’s weeks of planning finally came to fruition. Through both donations and participation, local support for the event was outstanding. Some participants — like 55-year-old triathlete Chris Forbes — were swimming to win, while others were doing so simply for fun.

In standing behind the Nivala sisters every step of the way, the Vineyard community truly showed its commitment to encouraging young Islanders who aim to make a difference. What was most touching on the morning of the event, however, was the support among a smaller family.

The sisters’ parents and younger siblings were on hand — cheering, helping, and swimming. The star of the show was Karinne, the girls’ 7-year old sister who, aided by her family’s cheers and Kaija’s accompaniment in the last leg of the race, beat out the competition to become her age group’s winner of the 200-meter swim. Tired but elated, she gave older sister Kaija a big hug before climbing out of the water.

The main goal of Swim for Jesse was to increase awareness of eosinophilic disease and its effects. A secondary goal was to raise money for the CURED Foundation, an organization that supports leading eosinophilic disease research centers. All of the proceeds from race registration benefited CURED, and many participants, inspired by Jesse’s story, offered additional financial donations to his family directly.

A busy college student, Rebekah is not sure what next summer holds for her. If she is not able to return home and organize a second Swim for Jesse, she hopes that another Islander will take the reins and make it an annual event. With or without Rebekah at the helm, the fundraiser’s future seems bright. If the Nivala family isn’t directly involved, the larger Island family most likely will be.