It was an unusually warm Saturday in February 2006, so Brian Richardson took his 22-month-old daughter Alexandra to the Newbridge Road Park in Bellmore to play. They had a wonderful day together. Alexandra’s mother, Danna remembers, “She went to bed that night a happy little girl.”
The next morning Danna peeked in on her daughter and saw she was still asleep. She went to the kitchen to make breakfast. In the middle of preparing the meal, Danna said she had a bad feeling. “Alexandra was usually an early riser,” she says. She went back to check on her sleeping daughter.
“I put my hand on her back and I knew immediately she was gone,” Danna remembers. Rigor mortis had already set in. The reality of what happened to Alexandra never does.
There is no word in the dictionary to adequately describe the death of a child. No definition or description to give the death true meaning.
An autopsy was completed, but the medical examiner could not specify why Alexandra had died. Understandably, her parents still wanted an answer for the death of their only child. Through a relative, Danna got in touch with the CJ Foundation at the Hackensack University Medical Center, one of the leading Sudden Infant Death Syndrome (SIDS) organizations in the United States. When children over the age of twelve months pass way for no discernible reason, the center calls it: SUDC (Sudden Unexplained Death in Childhood). They declared Alexandra a victim of SUDC, because all other known causes of death were ruled out.
SUDC is a very rare occurrence. Only 1.3 deaths per 100,000 children are attributed to SUDC, according to the website www.SUDC.org, but that doesn’t mitigate its impact to the families involved. That’s 10 deaths attributed to SUDC in a million. Danna said that 45 times that number of infants die from SIDS.
Although Danna and Brian finally had a diagnosis for Alexandra’s death, they didn’t find their grief any easier to bear. “I had to change my routine,” Danna says, “where I shopped, the gym I went to.” People didn’t know what to say or how to react to her, she recalls, because Alexandra’s death had no easy explanation.
“It’s so uncommon to have a perfectly healthy child not wake up,” Danna says. “On Long Island I know of only four other cases in the last seven years.” There might be more cases that went unreported, she says, because the deaths might not be recognized as SUDC by the Medical Examiner.
Danna and Brian went to several local support groups for parents who have lost children, but none could help them cope with the way Alexandra had died, so for almost two years they traveled to the CJ Foundation for group counseling.
If you search online you will find heartbreaking posts from parents that lost a child to this silent killer. “I’m lost most days watching the clock, thinking of what we would and should be doing,” one mother wrote after the death of her son.
“For the first time in my life I had no role,” Danna recalls. She had left her job in New York City to be a stay-at-home mother. The days without Alexandra seemed endless.
But then she found inspiration. “I wanted to tell the world about my daughter,” Danna says. “I wanted to do something in her memory. I wanted to do an event, and I wanted to plan it like it was my job.” Danna and Brian decided that a family walk/run would be a positive way for the community to remember Alexandra.
That October, eight months after Alexandra died, the first annual Alex’s Run for A Reason was held at Newbridge Road Park, the same place where Alexandra used to play. The Richardsons raised $98,000. The money went to SUDC research, an awareness campaign, a family support program and an SUDC newsletter.
“It was a lifeline for me,” Danna says. “Everyday I worked on it. Before the run I was petrified of forgetting her.”
But Alex’s Run for A Reason, now in its fourth year, has given Danna a modicum of peace after her tremendous loss. “People can’t do enough [to help],” she says. Danna knows that there are many charitable events that people can attend and she is grateful for the support she’s received. “We never imagined it would have turned out to be the event it has become,” Danna says. “We are humbled by the generosity and kindness of the people in our community.” Last year, it was rainy and windy on the morning of the walk but “people came in the pouring rain and we still raised $30,000,” she says. Since 2006 Alex’s Run for A Reason has raised almost $200,000.
The motto of Alex’s Run for A Reason is “Walk.Run.Laugh.Remember.” Danna accomplished what she set out to do: Raise awareness about SUDC while keeping Alexandra in everyone’s thoughts. These days Danna counsels other parents who have lost children to SUDC and has collaborated with a family in Colorado on branding Run for a Reason. Now there are SUDC events like this one in other cities across the United States.
Danna is also supporting new legislation to gather data for stillborn babies and those diagnosed with Sudden Unexpected Infant Death syndrome. “There’s no national collection system and we need one,” she says. Indeed, she says researchers are seeking a better understanding of why these children died and how to identify risk factors associated with these fatalities. There are no known ways to reduce the risk of SUDC, and it is unpredictable and unpreventable. And devastating.
Danna will always struggle with the loss of Alexandra, and sadly marks “would have been” milestones without her daughter. “The day I realized that it would have been her first day of kindergarten…the day I realized that she’s been gone longer than she was here,” Danna says sadly.
The Richardsons are now parents of a beautiful little boy, Brandon, almost three. Brandon sleeps with an Angel monitor, a movement-and-sound device connected to an under-the-mattress sensor pad. The memory of the tragic February morning in 2006 when Alexandra passed away is something that Danna always lives with.
“Alex is still a huge part of our lives,” Danna says. “It made me the person I am today and the mother that I am to my son.”
For more information email [email protected], or call 516-632-9260, or go to www.alexsrun.com
Alex’s Run for a Reason will be held 8:30 am. on October 24th at Newbridge Road Park in Bellmore.
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