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Local

Speaking up – Sugar Grove teen represents Epilepsy Foundation on Capitol Hill

SUGAR GROVE – Cristian “CJ” Girolamo of Sugar Grove had his first seizure when he was 4 years old.

The seizures continued to get worse throughout his childhood. However, his teachers just thought he was “spacing out” because his seizures consist of him just constantly blinking and staring off into space. He was not diagnosed properly with epilepsy until he was 11 years old and was having nearly 100 seizures a day.

He never had a grand mal seizure until after he was diagnosed. A grand mal seizure is when loss of consciousness occurs, and muscles suddenly contract and cause the person to fall down. Then the muscles go into rhythmic contractions, according to www.mayoclinic.org.

After his second grand mal seizure, he had a vegus nerve simulator device installed to help control the seizures. CJ is now 17 and still has roughly 50 seizures a day, but he’s able to live a pretty normal life. He is a junior at Kaneland High School, where he participates in track, cross country and wrestling.

“We have been blessed that CJ has been surrounded by wonderful educators that have supported him with his education, and coach [Chad] Clarey has encouraged and mentored him with his running,” said CJ’s mom, Lucy Girolamo. “When CJ was first diagnosed, we turned to the Epilepsy Foundation of [Greater] Chicago for support. Through the foundation, CJ was able to connect with other kids who were struggling with epilepsy just like he was.”

The Girolamo family involvement and bond with the foundation grew over the years, and they found great friends through the events they would attend.

“CJ and his family have been actively involved, and CJ really came out of his shell and has been a good advocate for himself and others,” said Casey Nunes, case manager for the Epilepsy Foundation of Greater Chicago. “Because of this was why we chose him as our advocate to represent the Chicago chapter at the National Conference in Washington, D.C., in April.

“Every year we choose a different advocate. CJ has taken the role and ran with it. He has started his own fundraiser and is ready to make a difference.”

In Washington, D.C., epilepsy advocates from around the country came together to advocate for themselves on Capitol Hill to increase aid to further research for a cure for epilepsy.

The participants had two days of training, where they learned how to communicate properly with the people who are making the decisions on their behalf.

“Even though we only spoke to the aides because Congress was in a budget meeting, speaking to them was very interesting,” CJ said. “They listened, asked a lot of questions and took a lot of notes. I think they knew this was a big deal.”

“Not everyone with epilepsy is able to live a normal life like CJ can, and he wants to create awareness so people understand what seizures are and remove the stigma,” Lucy said. “Witnessing a seizure can be frightening, but with education and awareness it will make it easier for people to help if they ever witness someone having a seizure.”

CJ’s goal is to go to college to become a technician or airplane mechanic. However, he needs to be able to drive in order to do that, and his seizures need to be better controlled in order to drive.

“We are very proud of CJ and everything he’s doing,” his mom said. “He’s a fighter, and we know he will accomplish anything he sets his mind to.”

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