For five years, Amy Diaz has woken on the first Saturday in August with a rush of bittersweet emotions.
On these Saturdays, her loss — the death of her 8-month-old daughter Bella Rose — becomes a community’s cause. An annual 5K race at WakeMed Soccer Park in Cary raises money, and awareness, to help other families avoid losing babies to sudden infant death syndrome.
“This is the day that gets me through the whole year,” said Diaz, tearful as she looked across the soccer park runners stretching before the start of the race. “If this helps one family, helps raise one more dollar so we can learn more about SIDS, it means something.”
Bella Rose was eight months old when the elusive syndrome cut short her life. Diaz, then a medical assistant at a Raleigh medical practice, was confounded and devastated. She never imagined her child would be at risk of SIDS.
“I was one of those mothers who thought it will never happen to me. How could it? We loved her. She wasn’t neglected. She was happy and healthy,” Diaz said.
Diaz’s then-employer, Carolina Family Practice and Sports Medicine of Raleigh, tried to help turn her tragedy into an opportunity to raise funds for a national foundation dedicated to researching the syndrome and educating families on risk factors.
“There’s still a lot of unknown there,” said Kathy Fleming, a committee member for the Bella Rose race. “The families that have to go through this, they end up carrying the banner. If we could do this one thing to help, we had to.”
The charity run, named in honor of Bella Rose, contributes all proceeds to the CJ Foundation for SIDS, a group that researches the syndrome, supports grieving parents and tries to teach new parents how best to keep their infants safe.
The past four races have drawn hundreds of runners and raised nearly $100,000.
Marjorie Sample of Raleigh has joined the walkers and runners each year since 2012. A friend of Bella Rose’s family, Sample said their tragedy has affected so many, so intimately.
“Her death shocked me and changed me,” Sample said. “Now, I never pass up the opportunity to talk to my friends and other new parents I meet about how they can try and prevent SIDS.”
Though much about the syndrome is still a mystery, researchers have been able to identify risks often associated with it. Babies who sleep in an adult bed, or who sleep on their tummies, are at greater risk of SIDS.
In 2009, the most recent year for which data is available, more than 2,000 children younger than 1 had their deaths attributed to sudden infant death syndrome.
For Ann Stephenson of Carrboro, Saturday’s race gave her an opportunity to talk to her 12-year-old daughter Amelia about SIDS. Amelia had been training all summer for her first 5K run. When Stephenson learned of the story behind the race, she tried to explain SIDS to her daughter.
“As a community, we have to talk about it. This was a good way to do it,” Stephenson said.