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Event to build awareness for Sudden Unexplained Death in Childhood

North Raleigh mom Sarah Whitenack is organizing Clare's Run for a Reason in honor of her daughter who died when she was 19 months old.

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Sarah Lindenfeld Hall

That Friday in September 2009 started out as usual for the Whitenack family in north Raleigh.

Mom Sarah Whitenack was looking forward to one of those small milestones for her younger daughter. Clare, the happy, fearless 19-month-old, had her final tumbling class for the session. Whitenack made sure she took plenty of pictures.

But Clare became fussy when she got home. She threw up the bit of lunch she ate and woke up from her nap feeling warm.  Whitenack feared the H1N1 virus, the flu bug that the world was focused on at the time. So Whitenack's husband took Clare to the doctor, who ruled out H1N1 and determined it was probably some other virus.

They gave her a Pedialyte and Motrin and put her to bed.

Sarah woke up in the morning to the sound of her older daughter singing. Around 7:30 a.m., she walked by Clare's room and noticed she was still and lying face down. Sometime in the night, Clare had died.

"It was awful," Sarah Whitenack tells me.

After an autopsy by Dr. Deborah Radisch, who is now director of the state's child fatality prevention team, there were still no answers. Her death was classified as "undetermined." And unlike the investigators on all those forensic shows on television, medical examiners couldn't even provide a time of death - a question that has always gnawed at Whitenack.

Clare's case was eventually entered into the Sudden Unexplained Death in Childhood research project. Sudden Unexplained Death in Children, or SUDC, is a cousin to the more common Sudden Infant Death Syndrome, the sudden and unexplained death of children under the age of one. SUDC happens to children older than one, often in their toddler years.

It is very rare. According to the Sudden Unexplained Death in Children Program, it accounts for 1.3 deaths per 100,000 children, compared to 57 deaths per 100,000 births for SIDS.

There is very little research about SUDC, no known cause and no known way to predict or prevent it, according to the program. One study has found that children with a personal or family history of seizures may be at a greater risk. Clare had never had a seizure before, but her mom had one when she was eight months old.

The Whitenacks hope the research project will help experts find ways to prevent SUDC. They also hope it will bring closure for their family, which now includes baby Zachary, who is about five months old, along with their oldest child Julia.

To help raise money for more research and also build awareness of SUDC, Sarah is organizing Clare's Run for a Reason on June 25 at WakeMed Soccer Park in Cary. The event includes a 5K run starting at 8:30 a.m. and a one-mile walk at 8 a.m. Activities for kids and a silent auction also are planned.
For more information and to register, go to ClaresRun.com. And watch the video to see my interview with Whitenack. Thank you Sarah for sharing your story with us.

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