The fourth annual Run for Casey, held by Maplewood mom Ellen Young, takes place this Saturday, May 2 at Nomahegan Park in Cranford.
The Run for Casey is meant to raise awareness and money for the Sudden Unexplained Death in Childhood Foundation, in honor of Young’s daughter, Casey, who passed away on June 3, 2011 at the age of 21 months from SUDC.
After her daughter’s death, while still living in Brooklyn, Young began hosting music events that would raise awareness for SUDC. Then, after moving to Maplewood, she began to run with Orangetheory Fitness, which inspired her to hold a 5K in Casey’s honor.
When organizing the first event, Young found that the main barrier was logistics. She said she questioned if she would be able to pull it off. She had never organized a race before. She channeled her energy and love for Casey into holding the event.
Now, the race is incredibly successful, she said, with hundreds of participants every year.
Ellen Young with daughter Casey when she was a baby. (Photo courtesy of Ellen Young)
Raising awareness for SUDC is important to Young. According to the SUDC Foundation website, SUDC is “a category of death for a child 12 months of age or older that remains unexplained after a thorough case investigation, including the performance of a complete autopsy, examination of the death scene, and clinical history review. Most often, a seemingly healthy child goes to sleep and never wakes up. At this time, we do not know what causes SUDC, how to predict it or how to prevent it. Also the statistic with cause of death is that, it is the 5th leading cause of death in children, yet receives no government funding.”
SUDC is also not well-known; Young states that part of the purpose of the run is that she wants “people to know that it exists.”
Young said she is “feeling stronger in knowing that this run has purpose and feeling stronger in what I am doing. This does bring me a sense of connection to my child, and it brings me a sense of purpose.”
At the same time, she said, “grief changes; you never miss your child any less. Time does not heal all wounds. How you deal with it changes, but the loss stays the same.”
Race day is also a way to celebrate Casey’s life and memory. “I want people to know she was here… she was my daughter,” Young said. “It’s a celebration of her life.”
Young added that was part of the reason why she incorporated a kids’ run into the event. The event is commemorative, but is not tragic. It is a way to express love and honor life.
Although people tiptoe around Casey’s passing, Young says bereaved parents want to talk about their children. “When you talk to someone who lost their child, it doesn’t make them sad… talking about Casey brings a smile to my face.”
Casey Young passed away in 2011 from Sudden Unexplained Death in Childhood (SUDC). (Photo courtesy of Ellen Young)
“Every time I am looking for pictures to post on social media – every moment of spreading awareness – brings smiles, tears to my eyes,” she said. “You carry your memories of your child every day – it is a way to connect with memories as a bereaved parent.”
For this reason, race day is meaningful, intense and deeply intertwined with Casey’s memory. “Race day can feel so emotional. …The event being in Casey’s name is a really big deal. Even though I am race directing and everything, I do run. As an emotional outlet on the day, that is sort of my gift to myself- I don’t want to run with anyone. That is how I deal with emotions on race day.”
The support Young has received throughout the journey has been critical. She found a support network of families who had been through similar struggles through the SUDC Foundation. Her Orangetheory and running community have also been a huge source of support. The Maplewood community, including local sponsors, like Artie’s, have been incredibly supportive, she said, and she feels “gratitude for everyone who puts aside time to help.”
She is also touched by “the support and the love from so many friends, strangers.” Although a large portion of the run involves people Young knows, a touching amount comes from unfamiliar faces as well.
And, of course, those closest to her were invaluable. “Friends and family are always at the top of all that support… they supported me through the trauma of losing her and now helping me volunteer,” she said. Young has two other daughters, Jordan Young, a CHS grad who now works at NBC in Washington, and Sydney Young, who is in 8th grade at Maplewood Middle School.
Young described grief as a journey. “But at the same time, it sneaks up on you still. One second something triggers you and then you are back into a different place,” she said. “You learn about yourself… you learn that joy and grief are allowed to – and do – exist together.”
Throughout her journey, Young said, she has learned that grief has the power to transform. It has given her a different perspective within her own work as a teacher.
“Being a bereaved parent… it affects anything that I do,” she said. “And I take care of other people’s children… a sense of time is precious and responsibility in care,” she said. “My job is to keep them safe.”
Within her own family, Casey’s impact can be felt. Her eldest daughter, Jordan Young, now works writing about and researching medical cases. The same is true for Young’s work with the race. “In the same way that being a parent informs everything you do, being a bereaved parent gives a different perspective,” Young says.
Through the race, Young honors the spirit of her daughter, stating that she thinks of “her spirit sort of being there – it is all for her. Every moment is a connection to her.”
Ellen Young runs during a previous Run for Casey. (Courtesy Ellen Young)
Adair Curry is an 11th grade student at Columbia High School who is working with Village Green as a paid student freelancer through a grant from the NJ Civic Information Consortium.
