By JACQUELINE DURETT
SOUTH AMBOY — The DiGuilio family is taking a number of steps to ensure their son is not forgotten.
The family founded Lyrics for Lucas in memory of Lucas DiGuilio, who passed away at 22 months old last year from sudden unexplained death in childhood (SUDC).
The family has started two new scholarships. One $2,500 award will be given to an academically successful Westminster Choir College student who also wants to use his/her talents to make a difference. Westminster is part of Rider University. The first scholarship will be awarded for the 2017-18 school year.
“This is actually their first music arts scholarship,” Albert DiGuilio, Lucas’ father, said of Rider, adding he is looking to expand the program in the future.
Lyrics for Lucas is also awarding a $2,500 scholarship to a college-age sibling of a child lost to SUDC. Lucas was a twin, and his sister, Kali, is turning 3 this month.
“Kali is doing very well,” DiGuilio said. “She talks to her brother every day,” he said. “She’ll carry his legacy on.”
Through the scholarships, DiGuilio said the family hopes to increase awareness of SUDC and keep their son’s memory alive. SUDC, he explained, is often confused with SIDS, or sudden infant death syndrome. In SIDS, the child is less than a year old; in SUDC, the child is older than 12 months.
DiGuilio said there are few resources for SUDC parents, and the SIDS organizations that he reached out to turned the family away.
However, he said, the country’s only SUDC organization happens to be based in Montclair, and he said the SUDC program has been extremely supportive.
“They’re able to really relate and really hold our hand as we go through a grieving process,” he said.
The founder, he said, “was an operating room nurse and really wouldn’t accept the answer that we have no idea.”
Since Lucas’ passing, DiGuilio has come to see how often SUDC occurs — the SUDC Foundation says exact figures are unknown, but estimates there are a couple hundred cases annually.
“It’s astonishing to realize how many there are,” he said of SUDC cases. “We’re just trying to get people to understand.”
With those goals in mind, the family started Lyrics for Lucas, and it held its first benefit concert at Starland Ballroom in October. A similar event is planned for this year.
“Lucas enjoyed music immensely,” he said, adding that Lucas had a little guitar that he used to play alongside his father.
DiGuilio said since resources are minimal, he has been on the receiving end of other impacted parents looking for support. He said he hears from families affected by SUDC every day.
“Unfortunately, this is one of those clubs you never want to be a member of,” he said. “We want to help raise the money that’s needed to support families.”
Lyrics for Lucas is also working with the Woodbridge-based organization Where Angels Play and together will be building a park in Lucas’ name this spring at the Garden Friends Early Learning Center in Parlin, where Kali attends.
“It’s something we’re going to do year after year,” he said of building a park for Lucas.
In addition, The Max Challenge in Sayreville also will hold a fundraiser for Lyrics for Lucas on April 22. DiGuilio said Lyrics for Lucas would share additional details as they become available.
To find out more about the organization or the scholarship program, visit lyricsforlucas.org or Lyrics for Lucas on Facebook.