In memory of ‘Nate the Great,’ who died of rare syndrome

MILFORD >> Even though they lost their older brother, Nate, to a rare syndrome before they were even born, Ben, 7, and Paige Pikul, 5, will never forget him or stop asking questions about “Nate the Great,” as their parents call their first-born.

Each year the Pikul family holds a fundraiser to honor Nate’s short life, and Ben and Paige are involved, even excited about the planning long before the event arrives in the fall.

The third annual Nate the Great’s 5K Race will be held Oct. 8 at the Rotary Pavilion at Fowler Field behind Milford Public Library on New Haven Avenue.

Last year, 250 adult runners and more than 50 children participated.

“Ben and Paige look forward to celebrating their brother; this provides a connection they never had to him on this earth,” their mother, Kate Pikul, said. “Their connection to their brother is really important.”

Nate, a healthy, fun-loving 18-month-old nicknamed “Nate the Great” for his outgoing personality and sparkle, died overnight Sept. 24, 2007, after an unremarkable day except for a slight fever from routine shots.

Kate and her husband, Kris Pikul, later found out Nate died from sudden unexplained death in childhood — SUDC — the death of a child older than 1 year.

While many have heard of sudden infant death syndrome, or SIDS, which typically affects children under age 1, SUDC is not widely known and is less frequent. It occurs in about 1.5 out of every 100,000 toddlers.

Pikul said the SUDC Foundation provides a centralized resource for information, support and advocacy and has created the first and only worldwide database for SUDC.

It provides bereavement services to families affected by SUDC throughout the U.S. and in 14 countries abroad and is a source of critical funding for SUDC research, she said. The research would not exist without the dedication of the foundation, she said.

For several years, the Pikuls celebrated Nate with a fundraising dinner to benefit the SUDC Foundation, and this will be the third year they are holding the run/walk, which last year raised $12,000 for the cause.

Pikul said honoring Nate and keeping the connection for their other children is the main reason to hold the event, and the $25,000 they raised in the first two events is the “bonus.”

It’s also important, she said, to raise awareness of the syndrome.

Pikul said that when you lose a child, life tends to break into two halves: before and after the death.

She said her children always want to know more about Nate — such as his favorite foods — and they want to see pictures that he colored.

The run/walk, where many friends and relatives reflect on Nate, gives the children “a broader experience” about their brother, Pikul said.

Pikul said she and husband have been touched by the outpouring of love and people who have shown up to celebrate Nate.

She describes Nate like this: “He loved to run around and kick a soccer ball. He had the bluest eyes and the sweetest smile that allowed him to get away with a lot.”

The low of the anniversary date and the high of the fundraiser so close together causes strong emotions for her, she has said, but it’s all made a little better by the support of the public and enthusiasm of her other two young children.

Ben began running the 5k at age 5, which amazes even his mother.

Lorri Caffrey, assistant executive director of the SUDC Foundation and an SUDC parent, has said it’s fundraisers like the Pikuls’ that make research possible, as well as helping other families heal at “the worst time in their lives.”

The foundation also provides healing resources for parents who have experienced the tragic loss.

“No parent should ever know the heartache of losing their child,” Caffrey has said. “It’s a unique group that no one wants to belong to.”

It was the SUDC Foundation that helped Pikul get through her darkest hours and now she volunteers to help families going through the same.

She has said the healing process starts by talking and “you want to talk to someone exactly like you who have gone through what you’ve gone through.”

Although Nate was baptized in the Protestant church, he is buried in St. Mary’s Cemetery, which abuts the family’s fenced-in yard — his grave only about 100 yards away from their kitchen.

For more information or to register, visit the website.

The race is chip-timed race. Awards will be given to overall male and female winners and top three in each age group. Snacks, water and juices will be available before and after the race as part of the registration fee. Post-run beverages will be provided by New England Brewing Co. for all registered runners and volunteers.

An after-party will be held at Stonebridge Restaurant for an extra $30 per person for those 21 and older. It is free for those under 21.