The sound of bowling pins crashing and children playing filled Little Apple Lanes last Saturday as people filed in to attend Christopher’s Pin for a Purpose.
The fundraising and awareness event, which was sponsored by the Sudden Unexplained Death in Childhood Foundation, was inspired and started by Eden Briscoe, who lost her son, Christopher Riley Briscoe, nearly one year ago to SUDC.
“It’ll be a year on Tuesday,” Briscoe said. “We don’t know why. He was 15 months old, so they told us he was too old for (Sudden Infant Death Syndrome).”
Briscoe said her family’s traumatic situation was amplified due to the fact that they did not know that SUDC existed and was a threat.
Their situation was not uncommon among parents who had lost children, Briscoe said. Many parents around the country lose children and walk away from their loss with little to no answer for the cause or about what to do next.
“Because of this experience, other parents didn’t even know it was real, we thought that there wasn’t any risk going forward once we made it past 12 months,” Briscoe said. “We don’t want to scare anyone, but we want people to know it’s a reality, that it does exist, and we want to raise awareness.”
There were 343 children who died of sudden unexplained death in 2014 in the U.S. with 202 of those being children under the age of four, according to the “Statistics” page on the SUDC Foundation website.
SUDC is an extremely rare condition that is relatively under researched and misunderstood. The condition, very similarly to SIDS, is a technical name for unknown death in a child, but deals with children over the age of 12 months, rather than SIDS which is classified for children under one year old.
For some parents, their loss is extremely unexpected and the death of a child can happen when everything seems perfectly normal. Candi Reed, whose second son, Bryce, died two years ago from SUDC, said this was the case for her and her family.
“My son was perfectly healthy,” Reed said. “He was 17 months old — happy, healthy, walking, talking, running, gone. It’s an event like this that raises awareness and money to help parents know why. Knowing why is all that any parent would want. Is there one reason or is there a hundred? There could be one of a hundred different genetic disorders, and we just don’t know. We can’t fight any of it until we find out the why.”
Reed’s desire to get answers is exactly the reason Briscoe said she wanted to start this annual event and is planning to continue to raise awareness as they move forward in their recovery process.
“To see her bear down and make her focus on helping other moms not go through the horror she experienced is her goal,” Sunnie Whittenton, Chapman, Kansas, resident, said. “It’s not monetary, it’s not for her sake or her own glory for her family, but to bring light on this condition. Kind of like SIDS, the struggle for research and information was few and far between ’til people started talking about it, and she wants SUDC to be just as common conversation as SIDS.”
Whittenton said she is a close friend of Briscoe’s and has supported Briscoe through her loss after connecting with her through the Protestant Women of the Chapel organization on Fort Riley.
According to Whittenton, Briscoe’s mission is getting parents informed, increasing legislation to protect parents in the medical process and getting funding for research.
“I want medical professionals to be educated,” Briscoe said. “After our son died, the medical professionals who were working with us instantly changed their demeanor after they found out that he was healthy and older than 12 months. People started looking at us and investigating us differently, and there was a human aspect that got left out. There needs to be something in the back of their heads that acknowledges this rare disorder could be going on. We need to be treated like human beings.”
Despite the need for fair treatment and investigation from medical professionals, the most critical aspect that needs to be addressed is making sure parents who have lost a child understand they are not alone, Briscoe said. Being connected to community and organizations like the SUDC Foundation are what Briscoe said she believes can have the greatest impact on giving hope and support to parents going through traumatic times.
“There are people out there who have been grieving alone for years, and that’s something that should never happen,” Briscoe said. “The loss is terrifying and isolating, but you should never be alone. After we did our interview with WIBW, we got contacted by so many people who were reaching out and were hurting and didn’t even know that SUDC existed. It was a chance for us to say, ‘We may not be able to help you personally, but here are some resources, like the SUDC Foundation, that can really help.’”