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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 5ks, 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.”(01/07/2019) ⚡AMP