Danny Did, so Carrie McAteer does
Carrie McAteer used to make her family and close friends promise they would never tell her secret. Now, she tells everyone. She has epilepsy.
The associate director of the University Internship Program at DePaul was diagnosed with epilepsy when she was a teenager. McAteer, who has worked at DePaul for 13 years, says her parents always told her the small seizures she experienced should not make her feel embarrassed.
"There is a stigma attached to epilepsy and I didn't want anybody to know because I didn't want to be identified as 'Carrie with epilepsy,'" McAteer says. "I just wanted to be Carrie. So for me it was easier to cope by keeping it a secret."
Epilepsy is a condition in which the nerve cell activity in the brain is disturbed, causing seizures. Many people with epilepsy have more than one type of seizure and may have other symptoms of neurological problems.
What allowed McAteer to finally open up about her condition was Danny Stanton, of Chicago, who died of a seizure at just four years old, two weeks before Christmas in 2009. Danny's parents knew he had epilepsy, but were never told by Danny's neurologist he could die during a seizure. If his parents had known about the risk of Sudden Unexpected Death in Epilepsy - or SUDEP - they could have taken steps to minimize that risk.
As a result of Danny's death, his parents started the Danny Did Foundation in 2010. The non-profit, family foundation's mission is to prevent deaths caused by seizures and create awareness of epilepsy. The name of the foundation originates from the last line of Danny's obituary, written by his dad: "Please go and enjoy your life. Danny did."
McAteer, who has a five-year-old daughter of her own, says becoming a parent inspired her even more to help families who have young children with epilepsy. She feels very fortunate to have a perfectly healthy daughter.
McAteer started as a volunteer for the Danny Did Foundation in 2011 and recently became the Board President in April.
"Right around the time I started volunteering with the Danny Did Foundation in 2011 is really when I felt comfortable telling people, 'I have epilepsy, and here is my story,'" McAteer says.
In fact, she was unknowingly connected to the organization from the start. After learning about the Danny Did Foundation, she researched the organization and found that the executive director, Tom Stanton (Danny's uncle), attended the University of Dayton as an undergraduate and DePaul University for his master's degree - her alma maters - the same years she did.
"I had never met Tom when we were at Dayton or in the School of Public Service at DePaul, but I reached out to introduce myself through LinkedIn and as cliché goes, the rest is history," McAteer says.
Connecting with Danny Did was the turning point that allowed McAteer to reveal her own struggles with epilepsy and to raise awareness for something she cares about deeply.
Now, 25 years after her diagnosis of epilepsy, Carrie enjoys talking about the disease rather than keeping it a secret. "The more people you talk to, the more educated people become and the less scary the disease may seem; but it took me a long time to get to that point."
In addition to her Danny Did duties, McAteer is serving her ninth year on the Board of Directors for the Lincoln Park Chamber of Commerce and is the director of external affairs for its executive committee. She is also a governor appointed board member for the State of Illinois Comprehensive Health Insurance Plan and serves on the Personal PAC board of directors.
Another one of her more recent achievements was graduating from the Illinois Women's Institute for Leadership. She was one of 12 women chosen in Illinois for the fellowship which includes training on leadership development, fundraising techniques, public speaking and digital media strategy.
"We all have our own reasons that inspire us to volunteer," McAteer says. "I feel so lucky to be able to do what I do at DePaul and volunteer with a non-profit organization like Danny Did; they both truly give me a great deal of fulfillment."
For more information about epilepsy, SUDEP, and the Danny Did Foundation, please visit http://www.dannydid.org/