Family, NH community mourn boy who ‘pushed us to do so much’ before dying on 11th birthday

Posted May 12, 2014, at 6:17 a.m.

Relatives recalled Nicholas Dainiak on Sunday as a vivacious child who continued to inspire his family and community long after being diagnosed with a debilitating neurological disorder.

The Bedford boy died Friday, the day of his 11th birthday, after battling pneumonia last week, said Heather Dainiak, Nicholas’ mother. He had been diagnosed at age 5 with Batten disease.

“We’re so sad and we miss Nicholas so much, but he’s definitely in a better place,” she said. “He’s happy. He’s walking and talking. He left us on his birthday because he wants us to celebrate all 11 years of his life. He definitely did that on purpose.”

Calling hours for Nicholas were Sunday at the Lambert Funeral Home in Manchester.

All afternoon, friends and acquaintances offered condolences and stopped for a moment at a small shrine. Included in the mementos were a picture of a grinning Nicholas and a blue blanket decked with baseballs.

Baseball was one of his favorite sports. He was able to continue playing the game in Little League’s Challenger division even after Batten disease led to macular degeneration and left him legally blind.

Nicholas had also been attending games at Fenway Park since he was a year old; his Bedford team visited Fenway Park once for a special day with the Red Sox.

“There wasn’t anything he couldn’t do,” said Dorothy Noyes, Nicholas’ grandmother. “As he slowed down, he really didn’t seem to notice. He never complained.”

Nicholas’ memory lives through the Our Promise to Nicholas Foundation, set up by the family after learning of his diagnosis.

Nicholas was healthy enough to be part of some of the early fundraisers, including the “Fore! Nicholas” golf tournament. The sixth annual event will be held June 21 at Stonebridge Country Club in Goffstown.

On April 12, the Bedford MOMS Club sponsored the sixth annual Our Promise to Nicholas Foundation Easter Egg Hunt. “We’ve used it to fund research to help cure Batten disease,” said Nicholas’ father, Dr. Chris Dainiak.

He has worked with researching physicians and said they are making progress. Also in attendance Sunday was Shane, a Pyrenees-collie mix service dog lying quietly next to a sofa.

Shane’s specialty was the ability to sense when Nicholas was about to have a seizure.

The dog would alert Heather, who would get Nicholas to a safe area before the seizure took over his body.

The New Hampshire Make-a-Wish Foundation and the Manchester Fire Department, which raised $12,500, helped acquire Shane in 2010.

The dog also helped Nicholas get around as his mobility deteriorated.

A picture of the two, with Nicholas grinning, was among the photos on display during the calling hours.

The family knew for more than half Nicholas’ life that the boy’s time would be limited to childhood.

They said they were grateful Sunday to the friends and acquaintances touched enough by Nicholas’ life and story to line up and console the family.

“We knew it was coming. I feel like we were grieving after he was diagnosed. He pushed us to do so much,” Heather Dainiak said. “He really turned our lives around to be selfless. That brought our community together.”

For more information: http://ourpromisetonicholas.com/

Distributed by MCT Information Services

 

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