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Greg Grunberg on Son's Epilepsy: 'Don't Let It Define You'

09/01/2009 at 04:00 PM ET
Kiley Bishop/London Ent/Splash News Online

If you’ve ever witnessed a stranger suffering a seizure, you know how scary those moments can be; For those who live with epilepsy on a daily basis, however, seizures are just another fact of life. Actor Greg Grunberg falls into the latter category, as dad to 13-year-old Jake, who was diagnosed with epilepsy. In creating TalkAboutIt.org, however, the Heroes star says he hopes to remove the fear factor often associated with a seizure.

“I was getting ready for a speech on epilepsy and I was thinking, ‘If I’m going to make an impact, what does this community really need?’” he recalls in a new interview with PARADE. “From talking to all the top docs and people in the community, I kept hearing the same phrase in the back of my head, ‘If we could just get people to talk about this.’” Noting that “if everyone knew about it, it wouldn’t be so scary,” Greg adds,

“It’s interesting because I approach it from the [perspective of the] father of a child who has epilepsy. I’m incredibly passionate about it. It’s made me relate to anybody. Everybody’s got something they’re dealing with. I mean, I’ve got cholesterol that I have to watch. This is what we teach our son, don’t let it define you, but at the same time deal with it, don’t hide it or be ashamed of it.”

Teaching Jake and his little brothers Ben, 9, and Sam, 5, to accept themselves for who they are has, in turn, enabled Greg’s kids to be similarly accepting of others. “My kids are the ones who see another child or person in a wheelchair and walk up to them and go, ‘Hey what’s the matter? What happened?’” Greg proudly reports. “It’s not like they look out of the corner of their eye and they’re scared.”

“They deal with this every day. Like a kid in class who might be autistic, they end up being their best friend. And Jake leads a walk in D.C. with 15,000 people behind him. He’s got his arms in the air and he’s leading this walk on the Mall and I’m really proud.”

Between his website, his acting career, his rock band or even his entrepreneurial endeavours– Greg is creator of the iPhone app Yowza — finding time to unwind is tough; When it arises, however, Greg says he chooses to spend it with his sons. “Playing with the kids and spending time with them is great,” he explains. “It keeps me in that child mindset. Without my kids and my family, I’ve got nothing.”

Jake, Ben and Sam are Greg’s children with wife Elizabeth.

Source: PARADE

– Missy

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Showing 6 comments

Alice on

Aw I’v loved Greg Grunberg since his Alias days. That’s great he’s raising his kids to be well-rounded and open-minded individuals. He seems very down-to-earth.

kris on

Love him! He sounds like he has a great attitude that he’s passing on to his kids. Never be ashamed of who you are.

Beck on

Love him! My son has had seizures since he was 11 months old and Mr. Grunberg was in all the pamphlets we received from the hospital. He is a stellar advocate for families dealing with epilepsy/seizures.

Wowza on

I completely agree with Greg on putting things out in the open. I work with a child who has Autism. He is 15 years old but functions on a 5 year old level. We often go to the park and play on the playground equipment. We attract many stares, or people just look away, wondering what his issues are. I would MUCH rather the other parents and caregivers just come up and ask me about the child. When we make things “hush hush”, we act as though they are shameful and should be hushed.

Gerrie on

Greg, Thank you for rooting for those of us who are still held hostags by this invisible menace, Epilepsy.

Heather Siebens on

I am applauding you my friend!!! I know God always has reasons for everything–they all mesh together… but to be the parent standing up with your child. My parents only dealt with it (me having it since I was 1) just enough to medicate me. But not fix anything. But after I had my child… things had to be fixed…they were unstoppable. That was when I was very blessed in 2002 and started going to Mayo–where yes, when I stay in the hospital out of like the 22 times I’ve stayed there–Dr. Sirven is wonderful. I have taken all meds, and the 2 that would make me seizure free now–after having had 2 brain surgeries–I can’t take. So we are moving on to the 3rd!!! I am fearless.. and very open about my life with epilepsy. Nothing I was ever ashamed of… all knew I was still me. Problem is… if you don’t feel that way-and are nervous, or don’t tell others… then you are asking for the others to reject out of lack of knowledge-how to handle it. My kiddo has absence seizures as well… praying she really does out grow hers.. if not.. she sure knows how to live with them!! Hands on training from her mom!! And for parents– never feel guilty— it isn’t you who caused it.. God has a reason for everything.. allows trials in our lives to strengthen us and those around us…. it has done so much good for my life. As long as you don’t let it bring you down!!!

Blessings and thank you Greg–hope to catch you on twitter!! @AliveinMe @EpilespyCures

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