The sudden loss of 8-year-old Collin George Whitmore, who passed suddenly last February from a brain disorder known as arteriovenous malformation (AVM), was devastating for his Sandy Hook family.

But his parents, Kim and Thomas, have worked to channel their grief toward helping more people understand the devastating implications of an AVM diagnosis, through local acquaintances they made thanks to an Arizona foundation established after major league pitcher Joe Niekro succumbed to a brain aneurysm in 2006.

"This foundation put my wife in touch with parents of children in Connecticut suffering with AVM," Mr Whitmore told The Bee. "One of the fathers was instrumental in working with State Representative Rob Kane to approach the governor and have September declared AVM Awareness Month."

Seven months after Collin's passing, the Whitmores were in the Senate Chambers at the State Capitol standing with parents Tom King and Ryah King of Middlebury, Senators Rob Kane, Tony Hwang and Lieutenant Governor Nancy Wyman for a ceremony memorializing September as AVM Awareness Month.

"This is a blessing for us in many ways," Mr Whitmore said, "least of which is bringing attention to a rare disorder from which Collin passed and helping to keep our son's spirit with us all days."

Collin's spirit is also kept alive on one of the Sandy Hook Elementary School playgrounds with a "buddy bench" dedicated to the young AVM sufferer, and adorned with handprints of his classmates.

There is a plaque on the bench quoting famed naturalist Jane Goodall that reads, "You Cannot get through a single day without having an impact on the world around you. What you do makes a difference, and you have to decide what kind of difference you want to make."

What Is AVM?

According to the AVM Awareness Project, another nonprofit dedicated to raising awareness about the condition, arteriovenous malformation is a type of vascular malformation causing an abnormal network of blood vessels where arteries shunt directly into veins instead of going through a bed of capillaries.

The walls of the blood vessels affected by arteriovenous malformation are very often much weaker than normal vessels, and may cause ruptures or hemorrhages from which blood leaks out, possibly causing damage to the surrounding areas.

Arteriovenous malformation is classified as a "rare" disorder, with a prevalence of around 0.02 percent, or 18 in 100,000 people according to the American Association of Neurological Surgeons. There are currently no well-established risk factors for AVM, but generally, it is regarded as a "developmental" or "congenital" vascular malformation present at birth.

Who Was Collin?

Collin was remembered in his obituary as "an old soul whose light brightened any room and whose smile would make you melt." His quiet enthusiasm for life was not only shown in the sports he loved - hockey and golf - but more importantly, in his ability to make anyone he came in contact know that their lives were special and that people such as Collin cared in a special and humble way, the tribute continues.

Collin always kept himself occupied and he had a love of country music - especially Zac Brown, Luke Bryan, and Kenny Chesney.

"As soon as one of their songs came on, he would sing and dance," the obit reflected. And of the boy's love of hockey, it was said that Collin's coach would say that he wished all of his players were like him. "Collin was always one of the first on and the last off the ice, usually helping the coaches clean-up."

While Collin was just as comfortable with adults as he was with children his own age, he proved to be a good friend to many students in his class as well as others in his school, the obit states.

He was once described by a classmate as "the only person who is nice to me." He was also remembered as a loving big brother to his two sisters, making sure that they were always taken care of when he was around.

A counselor at Sandy Hook School commented shortly after Collin's passing that most kids Collin's age see the world from their eye level down, Collin saw the world from his eye level up.

Fond Remembrances

At Collin's funeral, Father Reginald Norman of Our Lady of Fatima in Wilton, described for all intents and purposes as a member of the Whitmore family, recalled that when Collin asked "How are you?," he meant it and would wait to hear your answer, reflect on it and often say something profound in response.

"Many were surprised at the thoughtfulness and depth in which Collin responded, but it shouldn't come as a surprise because shortly after learning to talk he was already reciting prayers and not just in English, but Latin," Fr Norman said. "He also reminded everyone of the importance of saying grace before meals."

In the sermon, Father Norman talked about a chat he had with Collin's principal who recalled the young man "made everyone he encountered feel special. He cared so very deeply about everyone around him and made sure they knew it."

Referred to as "the mayor of Sandy Hook School," Fr Norman learned from his principal that Collin had an uncanny ability to visit the entire building in one short day, while another parent told Kim Whitmore that her son "was the much-needed healing, peace, and joy for Sandy Hook Elementary School after the tragedy."

"My family has been blessed with support from so many in this community," Mr Whitmore said. "The words, 'thank you' are no justice to the selfless generosity people have exhibited and I wish them all to know that they are in our thoughts and prayers."

The Whitmore family is in the initial stages of creating the Collin George Whitmore Foundation to help "bring focus to this disease while keeping the memory and spirit of Collin with us all days," Mr Whitmore said. Look for more details in The Bee as the foundation becomes established.