PHOTOS: Charity walk highlights support for Monroe girl a rare childhood epilepsy; Community comes together for Ciara ...

Written by Karen Kovacs Dydzuhn
Monday, 26 November 2012 05:00

Though it wasnt her birthday, a festive party was held for Ciara ODriscoll at Great Hollow Lake. The second grade student at Monroe Elementary School was diagnosed with Dravet syndrome, a rare childhood epilepsy, when she was 11 months old.

Ciaras friends, teachers and caregivers from Monroe Elementary School, as well as neighbors and Monroe Volunteer Emergency Medical Service staff members who have gotten to know her, participated in Monroes first annual Steps Toward a Cure charity walk.

Ciaras parents, Lori and Liam ODriscoll, are the founders of the Dravet Syndrome Foundation, established in 2009.

Lori ODriscoll said the Monroe-based nonprofit organization has donated $1 million for research and $30,000 for family assistance. While we work towards a cure, we also want to help families, she said. A full-time volunteer, Lori is the president and chief executive officer of the foundation.

Liam watched over Ciara, 7, early on walk day as she and her brother Aidan, 4, got their faces painted by volunteers from Masuk High School. Lori was busy registering last-minute participants at a nearby tent.

Fund-raising event attracted hundreds of children and adults

The 1.5-mile walk, measured by two laps around the lake, attracted hundreds of children and adults.

This is an outlet for my wife to contribute in a positive way, Liam said. She got a group of five or six people together to help her and it just grew. Its surprising how many people came from so far away to be here today.

Steps Toward a Cure walks were planned in 10 locations around the United States this year. Ciaras Butterfly Bash is a formal gala that also raises money for the foundation.

Support from h! er teachers

Ciaras teachers from Monroe Elementary formed Team Teach to support the young girl they adore. We all wanted to help her, Sara Karwoski said.

Karwoski worked as a permanent substitute teacher in Ciaras classroom last year. Although she is currently employed in the Trumbull school district, Karwoski stays in touch with her Monroe colleagues and the ODriscoll family. She donated 25% of Sundays sales for Thirty-One Gifts to the Dravet Syndrome Foundation.

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Sharon McCauley, a reading specialist at Monroe Elementary, said she had looked forward to the charity walk. This is a good cause, McCauley said. Its also great for the community to show all of this support for Ciara.

Chris Hughes, a special education teacher, and Ciaras first and second grade teachers, Cathy Murray and Janet Densky, couldnt say enough positive words about Ciara.

Densky said, Shes so bubbly and she loves school. She always has a lot to contribute and always has her hand up.

Despite Ciaras challenges, Murray pointed out, She always has a smile on her face.

Schools praised

Lori praised Monroes schools, especially its preschool program for children with special needs. Shortly after Ciaras diagnosis, Lori began to research towns in Connecticut, like Monroe, offering such programs.

She describes the familys move to Monroe in 2006 as the best decision we ever made because the staff in the preschool is amazing.

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Early diagnosis and early intervention are critical for children with Dravet syndrome, Lori said.

Elizabeth Rodriguez, Ciaras nurse, accompanies her to classes throughout the day. Theyve been together since Ciara was 4 years old. Shes amazing, Rodriguez said. I go everywhere with her. I help her with homework but I also just keep her safe because at a moments notice she could have a seizure.

When she was first diagnosed with Dravet syndrome, Ciara experienced 150 seizures a day. Though the seizures havent completed stopped, Lori said they now are much shorter in duration and occur only once every three to four days.

Because there is no cure for Dravet syndrome, Ciaras seizures and symptoms will never go away.

Lives a full, active life

Ciara lives a full and active life, though. Lori said Ciara takes ballet, tap and jazz classes but understands that if a seizures occurs, she will have to go home. We decided that we didnt want to keep her in a bubble, Lori explained.

Ciara is also a member of Brownie Girl Scout Troop No. 34142. About 17 Brownies in her troop took part in the walk.

Sue Dedonato, co-leader of the troop with Stacey Baghdady, said she was proud of the girls for showing up for Ciara. Theyre very supportive of their friends, Dedonato said. Its heartfelt how much they look out for her. They were all really looking forward to coming today, too.

Sharon and Shawn Shanley, neighbors of the ODriscolls, also wanted to demonstrate their concern for the family. We live! across t! he street and see Ciara all of the time, Sharon said.

The days activities included lots of breakfast and lunch foods donated by various local businesses, raffle prizes, childrens games, and pumpkin painting sponsored by Santa Energy.

Representatives of the Stepney Volunteer Fire Department and Monroe Volunteer EMS, and the Bluefish mascot, also were present. Music was provided by Star 99.9.

It absolutely exceeded my expectations, Lori ODriscoll said.

For information go to dravetfoundation.org.

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