MONROE, CT – Ciara O’Driscoll has touched many lives while raising awareness for Dravet syndrome, a rare, drug-resistant epilepsy that begins in infancy or infancy, causing seizures while inhibiting development.
Despite his own diagnosis, the 12-year-old Jockey Hollow Middle School 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 illness on January 16, 2017.
“She was just that little girl who saw nothing but good in the world, and she radiated out of that, so it was hard not to be inspired when you were with her,” said Lori O’Driscoll, Ciara’s mother. . “Ihasn’t made you realize that the little things that seem to bother people in their daily lives really aren’t that important. The most important thing is spending time with the people you love and making memories.
Ciara is also greatly missed by her father, Liam O’Driscoll, and her brother, Aidan, 13, who she loved to play with.
Lori O’Driscoll, started the Ciara’s Light Foundation to provide financial assistance to families with children, who have special needs or a life-threatening medical condition. It also offers scholarships for graduates of Masuk High School who plan to pursue a career in special education at a four-year college.
The Ciara O’Driscoll Memorial Bursary for Special Education offers between $ 500 and $ 1,500 for their education.
The foundation also annually awards the Ciara O’Driscoll Memorial Hope Scholarship, valued at $ 500 to $ 1,000, to a Masuk High School graduate with special educational or career needs. post-secondary projects.
Due to the COVID-19 pandemic, no scholarships were awarded last year, so O’Driscoll hopes to award a total of four scholarships this year, two for graduates of the class of 2020 and two for current seniors. .
Although the students are back to school this year, applications for the O’Driscoll scholarships have not been received.
For application forms and information on applying for the Ciara O’Driscoll Memorial Special Education Scholarship, click here. To apply for the Ciara O’Driscoll of Hope Memorial Scholarship, click here. Those with questions can email Lori O’Driscoll at [email protected]
The application deadline is October 20 and O’Driscoll hopes to announce the scholarships at In pursuit of the 5km / 12km lightweight race from Ciara to Great Hollow Lake on October 30th.
All proceeds from the event, which also includes a fun run for the kids, goes to the Ciara O’Driscoll Memorial Scholarship Program and the Ciara’s Light Foundation. To find out how to register, click here.
The race did not take place last year, due to the COVID-19 pandemic, but supporters do get there in October.
“The support we receive from the community is so touching,” said O’Driscoll. “It all happened so fast. It’s only been a month since we found out we can do it. I had a small army of Monroe community volunteers – and now all we need are runners and walkers to enjoy the event.
O’Driscoll said his family was 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 footballer came for a walk with her son, Aidan.
Ciara Butterfly Festival
During Ciara’s lifetime, O’Driscoll founded the Dravet Syndrome Foundation with another mother in an effort to increase awareness and research funding for Dravet syndrome and associated epilepsies. Its flagship event was its annual gala: Ciara’s Butterfly Bash, held in Greenwich.
“Ciara’s Butterfly Bash is an adults-only event, but Ciara was getting up and talking,” O’Driscoll said. “She helped raise the hope of people with the disease that it was not just pessimistic. Not only was she a good speaker, but she wrote it herself, ”O’Driscoll added of her daughter’s speeches.
No longer active within DSF, O’Driscoll puts all her energy into Ciara’s Light Foundation, of which she is the general manager.
In addition to scholarships, Ciara’s Light offers grants for families with children with special needs or life-threatening medical conditions to purchase assistance dogs, medical devices, suitable safety equipment, home safety items. and items and services not covered by insurance.
The foundation also offers grants allowing families to send their children to camp and unified dance. O’Driscoll said she wanted them to have the same opportunities as Ciara.
“We are also working to raise awareness of SUDEP and Dravet syndrome,” she said. SUDEP is the sudden and unexpected death of a person with epilepsy, who was otherwise in good health.
O’Driscoll is hopeful that Masuk’s seniors will apply for the scholarship to pursue a career in special education, due to the help Monroe’s professionals have given to his own daughter.
“We moved from Monroe to Stamford, just before Ciara was two, for the special education preschool program,” she recalls. “It was by far the best decision we made. The teachers and staff were so good to her. That’s the whole program. He transferred to Monroe Elementary School and then to Jockey Hollow when she passed away.