Lunden and Patrick MacDonald put their son Angus down to sleep one June night in 2003, and he never woke up.
Angus, whom they lovingly called "Gus," was a normal 18-month-old child in seemingly perfect health.
"It was horrible," Lunden MacDonald said on a drizzly day five years after the death of her first son. "We had nowhere to turn."
Gus' death came out of nowhere. After some initial questions from police and doctors, and no indication as to what may have caused their son’s death, the MacDonalds turned to a local support group for parents whose children had died in their sleep. But the MacDonalds felt a bit out of place, as their child was well beyond his first birthday when he died.
The support group was for parents who had lost children to a well-known killer, Sudden Infant Death Syndrome. But SIDS — an affliction that kills roughly 2,500 babies in the United States every year — has a lesser-known cousin: Sudden Unexplained Death in Children.
SUDC isn't new, but it's very rare, according to Dr. Henry Krous, director of the San Diego SIDS/SUDC Research Project. SUDC is a way to describe the sudden deaths of children more than 1 year old that have no apparent cause. It happens to a little more than one out of 100,000 children every year.
The MacDonalds met Jake and Tami Gove, who had lost their 15-month-old son Josh around the same time and in the same mysterious way.
"It was total luck," MacDonald said. "A twist of fate."
The two families got involved with the Sudden Unexplained Death in Childhood Program, a project of the New Jersey-based CJ Foundation for SIDS. They soon formed Josh and Gus's Run for a Reason to raise money for SUDC research.
"It's called the 'Run for a Reason' because we want to find a find a reason as to why this happens," MacDonald said.
The fifth run will take place at 8:30 a.m. Sept. 21 at Clement Park. The event includes a 5K run, a 2K family fitness walk, food and entertainment for kids. All proceeds go to SUDC research.
The run has raised more than $200,000 in the first four years, MacDonald said. Some of the money has gone to support the work of Dr. Hannah Kinney of Children's Hospital in Boston. Kinney published a paper last year offering a potential explanation for SUDC, based on anomalies in a region of five SUDC victims’ brains, slight sickness in each and minor head trauma.
"It's been an absolutely amazing discovery," MacDonald said. "Because it does give us some kind of a reason."
MacDonald said she hopes Kinney's paper will lead to more research and hopefully a way to test toddlers for potential problems. Kinney's research has also found inconsistencies in the ways medical examiners and coroners perform autopsies in these cases, limiting the usable research material available to SUDC researchers.
"Hopefully this will open the door to making legislative changes," MacDonald said.
The work of Kinney and others has shown some common factors among SUDC deaths, and that has allowed MacDonald to test her other children — Murphy, 5, Maeve, 3, and Declan, 7 months.
Since they launched the event, there have been nine other Runs for a Reason across Colorado and around the nation, each with different names. MacDonald expects about 1,000 people to participate in the upcoming event, but in past years she's seen as many as 1,300 sign up.
MacDonald said that nine families in the Denver area have had SUDC deaths since Gus died. In an important milestone, the Arapahoe County coroner listed SUDC as the official cause of death for 23-month-old John Franklyn Jr. of Aurora a couple years ago. Franklyn's mother, Sara Franklyn, said she is going to get involved in supporting SUDC research.
"We're grounded in our Christian faith, and that helps a lot," Franklyn said. "We never found concrete answers and medical answers, but we found answers in our faith."
The lack of tangible answers makes dealing with the loss more difficult, Franklyn said.
"You almost want to find something or someone to blame for it to resolve your feelings, but it's almost impossible."
She said John Jr. was "totally healthy, a big strong guy, we put him to bed, and he just did not wake up."
Franklyn said John Jr. had occasional fevers that lacked most of the symptoms of a typical cold in the months before his death. She's also researched her family history, which includes heart problems, but never found anything conclusive. She hopes that supporting SUDC research and pushing for a uniform autopsy method in SUDC cases will help prevent it from happening to other parents.
"Maybe that way we can pinpoint possibly what there's a pattern with," Franklyn said. "There's just not enough evidence. But as we get more minds involved, there will be more ideas, and maybe we can get something done on this. Because that's the worst thing is for a child to die. The worst thing."
MacDonald said she and Tami Gove promised each other their sons did not die in vain.
"We made this promise that we would never let our little boys get forgotten," MacDonald said. "That's how we honor our children's lives. We don't want other families to be stuck by themselves."
Pre-registration for Josh and Gus's Run for a Reason has closed, but people can show up at Clement Park on Sept. 21 and register on site. Donations can be made at www.joshandgus.com, or at www.sudc.org.