Lynn woman running Boston Marathon in honor of longtime friend

Courtney Ekstrom is running the Boston Marathon in honor of longtime friend Nicholas Capano (Courtesy photo)

Courtney Ekstrom is not running 26 miles in April for self gain, she’s running to share the story of Nicholas Capano.

Thirty years ago, Capano was born at Tufts Medical Center with spina bifida, which led to Type II Arnold-Chiari Malformation, a type of malformation in which both the cerebellum and brain stem tissue extend into the hole at the skull base for passing of the spinal cord. At the age of three he had a stroke and at the age of six he had a second stroke, said his mother, Patti Capano. He lives his day-to-day breathing via machine in a motorized wheelchair with a ventilator, a tracheostomy tube, a gastrostomy tube, and a shunt in his head because he was also born with a hole in his brain stem.

But, Capano never let his medical setbacks limit him in any way, said his mother. With the help of family and friends, he’s participated in 5k marathons, hiking trips, regularly attends boxing classes, and has worked as an office assistant at Bridgewell since 2014, after being hired by the late Kelly Martin.

“A year ago we were talking about this one gentleman who was a paraplegic and Nicky felt terrible,” said Patti Capano. “He was like, ‘imagine,’ and I went ‘Nick, you’re a paraplegic.’ He had no idea because, throughout his life, we didn’t label him, we only labeled his abilities and, while he was very aware of the definition (of paraplegic), he did not ever compare himself to that. I was so proud of him for being so self assured in his body.”

Ekstrom, 24, met ”Nicky” Capano in middle school, after she began dating his younger brother Jonathan, whom she is still with today. In the decade she has known the Capanos (Patti, Jonathan, his father Mario, and second brother AJ) she said she has seen all the ups and downs they have gone through regarding his health.

Inspired by his strength, she decided to run the Boston Marathon on April 15, in partnership with Tufts Medical Center.

“I wanted to show how he has gotten through so much and a lot of that has been with the help of Tufts,” she said. “I couldn’t have wanted to partner with a better organization, so I basically told them our story and said ‘Nicky is celebrating his 30th year and I want to run 26.2 miles in celebration of this awesome human being.'”

Patti Capano said her eldest son’s life was saved dozens of times at Tufts and many of the nurses who were there when he was born are still very much a part of their lives today. Ekstrom had a lot of other organizations vying for a marathon partnership with her, but it was her heart that led to her decision, said Capano’s mother.

“I feel honored,” said Nicky Capano. “I think it is a great opportunity.”

Ekstrom began fundraising for the $6,000 marathon entry fee in October, but decided she wanted to shoot for a larger goal, she said. She created an online donation page and held a Tufts Trivia Night fundraising event and is currently $100 shy of their $7,000 goal. All proceeds will go to the medical center after the marathon, she said.

“I’ve been training for a month now and some days have been really hard,” said Ekstrom. “I’ve texted Nicky and said I’m not sure if I can do it and he’s always like, ‘if I can do the things that I’ve gotten through in my life, then you can get through 26.2 miles.”

On the way back from a family trip to Atlanta last summer, Capano ended up in the hospital, for the first time in 15 years, with pneumonia. His mother said he couldn’t get over the illness and ended up in the ICU for four days during that Halloween weekend. It took him a full year to recover because his respiratory system was compromised and rebuilding from that was a difficult road.

“As Courtney watched Nicholas’ serious side unfold, and then mend, she really became very firm in making sure he was well, he was doing what he needed to do, and that whoever was with him was compliant to his medical needs,” said Patti Capano. “Her compassion and love for Nick is far beyond her boyfriend’s brother.”

While Ekstrom has run a number of marathons before, her biggest challenge comes in four short months. Even though she will not be pushing Capano, they are running this marathon together, she said.

“The strength of Nicky and the story of Nicky is truly so inspiring,” said Ekstrom. “Knowing that he is going to be at the finish line will get me there, whether I’m crawling or walking.”

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