Inspiring woman shares story of hope

“Once upon a time there was a girl named Ciara. She loved mermaids, fairies and believed Teenage Mutant Ninja Turtles were real. She loved life the way all of us should. I’m lucky enough to be her mom,” Lori O’Driscoll said during last week’s Women Who Inspire Luncheon in Stratford.

Lori O’Driscoll (left) and her daughter Ciara in January. 

Ciara died due to complications from Dravet syndrome, a genetic seizure disorder, on Jan. 16, a few days after her 12th birthday.

O’Driscoll spoke to the audience members — many of whom work with or have a child with a life-threatening condition — about the importance of hope.

“It is such a powerful feeling, you have to reach for it and grab it,” O’Driscoll said. “It can motivate you and do so many positive things, you have to try.”

Ciara

She said that Ciara’s unflagging positivity and courage throughout her battle with Dravet syndrome gave O’Driscoll strength.

She said her daughter boogie boarded and went zip lining, go-karting, ice skating, bungee jumping, and horseback riding, despite knowing she could have a seizure at any moment.

“She was fearless,” O’Driscoll said. “We always knew she was the exception.”

O’Driscoll said Ciara’s unstoppable optimism inspired her and pushed her to find a cure.

“I’ve always wondered how she was the luckiest of the unlucky children with Dravet,” O’Driscoll said. “Now I know it was just Ciara. This determined, energetic, loving soul who refused to be anything but happy. It was all her.”

In 2009 O’Driscoll founded the Dravet Syndrome Foundation in an effort to fund research to cure Dravet.

“Ciara became the poster child for the foundation but also a source of hope for families all over the world who had a child diagnosed with Dravet. It was the hope that there was a possibility that if you had the diagnosis you could still live a happy and fulfilling life,” O’Driscoll said. “Ciara was proof of that.”

When Ciara was diagnosed with Dravet, the doctor told O’Driscoll that Ciara would never speak, walk or write. Ciara was able to do all of those things, and she even danced.

“She inspired hope in so many. There were so many things that Ciara experienced and enjoyed in life that parents are told not to expect their children with Dravet syndrome to do,” O’Driscoll said.

During her speech, O’Driscoll read a letter her son had written about Ciara.

“Ciara was never afraid. She understood that she had seizures but that never made her afraid to try anything. She lived life rarely ever sad and was always smiling,” the letter said. “I hope everyone remembers Ciara’s smile and how hopeful she was. We call that Ciara’s light.”

Honorees

Tara Navara, the chief developmental officer at Make-A-Wish Connecticut, said the organization doesn’t just make wishes come true — it gives people hope by looking at what the child is like beyond the illness.

“What we’re really giving these kids is the gift of hope,” she said. “We see you, we know what you’ve been through. The illness does not define you. Tell us about you, tell us what you’re like when you’re not sick.”

During the luncheon, Make-A-Wish recognized four Stratford Wish moms for their strength and dedication to their children. Carol Antrum and her son Chris were recognized for their efforts to fight Chris’s Hodgkin’s lymphoma.

“Since his wish, the Antrums have really given back,” Navara said. “They have been grateful for even the experience they went through with Chris and they have been giving back.”

Carol currently works with Make-A-Wish as a volunteer and helps grant kids’ wishes.

Kristi Bacik and her son Jimmy were honored for their efforts to ensure that Jimmy’s blindness doesn’t keep him from achieving his goals.

“They have this phenomenal communication between the two of them, and it just spoke a lot to how she is as a mom,” Navara said.

Dana Faerdy and her son Quinn were recognized for Dana’s efforts to find a treatment for her son’s rare genetic disorder.

“Dana literally uprooted her family and she moved out to Minnesota with the boys to go through this procedure,” Navara said. “She has been a constant champion for her boys.”

Tanisha Smith and her son Tay’jon were honored for their dedicated fight with Tay’jon’s different medical conditions.

“His mom has been there every step of the way as his champion and his true advocate,” Navara said.

All of the mothers were given a decorative pillow that featured a phrase describing the individual mother’s character trait.

“I’ve learned so much from watching these moms and how they have carried their kids. They’ve walked through this journey, they’ve carried them on their shoulders,” Navara said.

For more information about Make-A-Wish Connecticut, visit ct.wish.org. The Women Who Inspire Luncheon was sponsored by the Sterling House Community Center in Stratford. For more information about Sterling House go to www.sterlinghousecc.org. 

About author
TinaMarie Craven is the Arts & Leisure editor. She previously worked as the editor of the Monroe Courier and the Lewisboro Ledger. She graduated from Ithaca College with a BA in Journalism and Politics in 2015.

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