MONROE, CT — Ciara O’Driscoll touched many lives, while raising awareness of Dravet syndrome, a rare, drug-resistant epilepsy that begins in infancy or early childhood, causing seizures while inhibiting development.
Despite her own diagnosis, the 12-year-old Jockey Hollow Middle School student defied the odds, learning math, reading, writing and public speaking. She enjoyed ballet dancing, horseback riding, ice skating and was learning to ski before succumbing to the disease on Jan. 16, 2017.
“She was just this little girl who saw nothing but good in the world, and she radiated that, so it was hard not to be inspired when you were around her,” said Lori O’Driscoll, Ciara’s mother. “It made you realize the little things that seem to bother people in their daily lives really aren’t that important. What’s most important is spending time with the people you love and making memories.”
Ciara is also deeply missed by her father, Liam O’Driscoll, and brother, Aidan, 13, who she loved to play with.
Lori O’Driscoll, started the Ciara’s Light Foundation to offer financial assistance to families with children, who have special needs or a life threatening medical condition. It also offers scholarships to Masuk High School graduates planning to pursue careers in special education at a four-year college.
The Ciara O’Driscoll Memorial Scholarship for Special Education provides anywhere from $500 to $1,500 for their education.
The foundation also annually awards the Ciara O’Driscoll Memorial Scholarship of Hope, worth $500 to $1,000, to a Masuk High School graduate with special needs for post-secondary school education or endeavors.
Due to the COVID-19 pandemic, no scholarships were given out last year, so O’Driscoll is hoping to award a total of four scholarships this year, two for 2020 graduates and two for 2021 graduates.
Last school year applications for the scholarships were not coming in.
For application forms and information on applying for the Ciara O’Driscoll Memorial Scholarship for Special Education, click here. To apply for the Ciara O’Driscoll Memorial Scholarship of Hope, click here. Those with questions can email Lori O’Driscoll at [email protected]
The application deadline is Oct. 20, and O’Driscoll hopes to announce the scholarship awards at the Chasing Ciara’s Light 5k/12k Trail Run at Great Hollow Lake on Oct. 30.
All proceeds from the event, which also has a Kids Fun Run, benefit the Ciara O’Driscoll Memorial Scholarship Program and Ciara’s Light Foundation. For information on how to register, click here.
The race was not held last year, because of the COVID-19 pandemic, but supporters are making it happen this October.
“The support we get from the community is so moving,” O’Driscoll said. “This all happened so quickly. It’s only been a month since we found we can do it. I had a small army of volunteers from the Monroe community — and now all we need are runners and walkers to enjoy the event.”
O’Driscoll said her family is grateful for the way people have supported the Trail Run over the years. She said Monroe Lions Football and Cheer has always sponsored the event and, this year, every third- and eighth-grade football player is coming to walk with her son, Aidan.
Ciara’s Butterfly Bash
When Ciara was alive, O’Driscoll founded the Dravet Syndrome Foundation with another mother with the goal of increasing awareness and research funds for Dravet syndrome and related epilepsies. Its signature event was its annual gala: Ciara’s Butterfly Bash, held in Greenwich.
“Ciara’s Butterfly Bash is an adult only event, but Ciara would get up and speak,” said O’Driscoll. “She helped raise hope for people with the illness, that it wasn’t only doom and gloom. She was not only a good speaker, but she wrote it herself,” O’Driscoll added of her daughter’s speeches.
She isn’t as active with DSF as she once was. O’Driscoll puts most of her energy into the Ciara’s Light Foundation, serving as its executive director.
Aside from the scholarships, Ciara’s Light offers grants enabling families with children with special needs or life-threatening medical conditions to afford service dogs, medical devices, adaptive safety equipment, home safety items, and items and services not covered by insurance.
The foundation also offers grants enabling families to send their children to camp and Unified dance. O’Driscoll said she wants them to have the same opportunities Ciara had.
“We also work to raise awareness for SUDEP and Dravet syndrome,” she said. SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy.
O’Driscoll hopes Masuk seniors apply for the scholarship to pursue careers in special education, because of the help Monroe’s professionals gave her own daughter.
“It was by far the best decision we made,” she said. “The teachers and staff at the preschool program went above and beyond to learn about Dravet and ways to help Ciara learn and grow as a student. That wasn’t unique to Ciara- they are that dedicated to all of their students. That dedication and compassion transferred to her school experience at Monroe Elementary and had begun at Jockey Hollow Middle School when she passed away.”