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Remembering Marieke & educating about epilepsy

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Contributed by: Pam Vetter on 4/21/2008

Actress Kendal Brenneman has performed in both film and television, but her hardest role to date was saying goodbye to a young lady who changed her life.

"My boyfriend's daughter, Marieke, 14, passed away in 2006 when she suffered an epileptic seizure in the bathtub," Brenneman explains. "Marieke had put 'ozville' as the answer to 'hometown' in her myspace profile, and it was actually available as a domain name. I started www.ozville.org at first to simply be a search engine that benefited various causes including epilepsy."

The site quickly grew with an intent to educate and remember those we've lost.

"I want people with epilepsy and parents of children with epilepsy to know that water is a very real danger. They may take precautions in lakes or pools, but most people who drown will drown in their own bathtub. Most people think it's safe, since it's only for a few minutes, they feel safe at home, or maybe they only take showers. But both baths and showers pose risks and people need to be aware of that," Brenneman explains. "It's important to take all necessary steps to avoid tragedy. My Web site also touches on SUDEP, which is a very real danger of having a seizure and dying, usually in one's sleep. There seem to be groups out there trying to spread the word about that, but as far as I know I'm the only one trying to educate about water."

Brenneman feels that epilepsy is an unseen disability and because it's not like a visual disability, it's often ignored.

"I don't really know why it's ignored. It doesn't get publicity. I think epilepsy scares people," Brenneman notes.

Brenneman took the time to find similar stories about epilepsy to share on her website. They include stories about Daniel, Becky, Kimberley, and Amber. Stories that break your heart, but stories that have to be told.

"I actually went looking for them. I wanted to focus on children who had drowned, but I'm finding it difficult to get in touch with the families of people I find online or in the newspaper," Brenneman says, "Right now, I'm trying to get in touch with the family of a young woman who drowned in her tub and was found by her roommates. I would like it if people would come looking for me and share their stories."

The memorial tribute Brenneman created for Marieke is moving and beautiful.

"I wanted to show her joy, her love of life. The way she cared for others. She made everyone laugh. She was an inspiration to anyone who met her and spent time with her. I feel like the whole world has lost out. No one else can meet her. So I feel like I'll do whatever I have to do to introduce people to her," Brenneman says, committed to sharing her story. "People need to chill out, have fun, laugh a lot, make others laugh a lot, and love each other. She was always good at letting people know she cared about them. Something I'm still working on."

Of course, Brenneman's life has changed since Marieke passed away.

"People probably want to hear something inspirational, but I don't know if I have that. We were grateful for our life before, with her. We knew we were blessed with her and her brother. It was as perfect as you could get. My life - our lives - were shattered. I get mad at parents who yell at their kids. I look for signs from her that never come, but I keep myself busy because I don't know what else to do," Brenneman admits, "This weekend, we're driving down to San Diego to take part in Sharon's Ride.Run.Walk. It's an event that raises money for the Epilepsy Foundation. I have a mission beyond fundraising. I created silicon bracelets to hand out that carry the message 'epilepsy isn't waterproof.' We also made some big car magnets to get people thinking, on the way there, and in the parking lot."

Brenneman's only just started her new mission to share Marieke's story while also educating the world.

"I'm going to be adding a new page to www.ozville.org that will let people leave a brief message and sign their name, pledging to be more 'water aware.' I'm also selling the epilepsy bracelets on the site to fund the purchase of more bracelets for future epilepsy events."

To read more about Marieke or to visit Brenneman's website link to www.ozville.org.

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