Although the life of 9-year-old Evan Nesby was cut short, his story is an inspiration that even through its challenges and most difficult periods, life's everyday moments can be celebrated and cherished.
Evan passed away this past February from to a rare brain disorder called Moyamoya, caused by blocked arteries at the base of the brain. To honor Evan, members of the have organized a free event at the Middletown FOP Lodge at 1 p.m. this Saturday.
“He loved to have hoopla about him,” said Middletown firefighter Jason Defreitas, Evan’s uncle. As if Evan organized it himself, the party will have a DJ, Bouncy House, free food, prizes, trucks from the Middletown Police and Fire Departments, a dump truck, kids dance-off, water balloon toss and a cash bar for adults.
Defreitas has organized the event with his brother, Brian Defreitas, who is also a Middletown firefighter and close to the Nesby family. The brothers said the event has been funded through personal donations provided by members of the department as well as contributions by small businesses in the community.
Evan’s grandmother, Marilyn Hennessey retired from Roger's High School after working 35 years as a biology teacher, when she found out her daughter Erin was pregnant with Evan. Since he was born, she spent everyday with her grandson.
When asked what has given her strength, she responded it is Evan.
“He fought back, he loved life,” said his Grandma.
Hennessey said Evan was in awe at his first touch-a-truck event was when he was 2-years-old.
Members of the department said they remember how he ran around the floor to get a look at all the trucks. His grandmother said not only did he win the Forest Avenue Fishing Tournament three years in a row, but he was able to quickly find fishing holes in new waters, a knack most experienced fisherman are unable to claim.
“He is probably teaching God to fish,” said Capt. Adam Westman, which brought a warm smile to Evan’s grandmother.
“He probably is,” she agreed.
She said Evan was a warm-hearted child, full of energy and life and believed that people were good.
“He wasn’t defined by his illness,” said Brian Defreitas.
“He was very goal oriented,“ Hennessey agreed. “He was just a kid who got some headaches. He got better once, he would get better again,” she said. Evan underwent his first operation in 2010 and then a second time in 2011.
His goal to get better from the first surgery was to visit Disneyland, a wish his family granted last fall. After the latest surgery, his grandmother said he just wanted to get better so he could play football. Even his doctor thought he was ready to start to play sports, she said.
Evan held the same level of expectations on his grandmother. They played football everyday after school, but one afternoon she asked to sit out because her hip was bothering her.
“Well, then use the other leg grandma,” he told her.
Evan was diagnosed in December of 2009, after his parents brought him to the Children’s Hospital in Boston because he complained of headaches. Although it is a rare cerebrovascular disorder, a technician detected it as Moyamoya almost immediately through a MRI.
The family was immediately connected with Dr. Robert Scott, who happened to practice out of Boston and had developed the operation for Moyamoya.
“It was a miracle that we connected right way with one of the best doctors for Moyamoya in the world,” said Hennessey.
Despite the endless tests, headaches and doctors visits, his grandmother said Evan always had a smile on his face.
“You know mom, I think I’m having a bad day,” he told his mother once in the car. Ironically, he was referring to just an ordinary bad day; his family said he never considered himself unlucky or different because of his illness.
She said Evan's his spirit has remained alive in the community, through the outpour of love and support.
“I’ve never seen anything like it,” she said “People are so good. The community provides.”
The celebration for Evan is free and open to the public:
When: Saturday June 23
What Time: 1 p.m. - 6 p.m. (or later)
464 Mitchells Lane, Middletown