Imagine giving birth to a beautiful healthy baby girl and finding out about six months later that your daughter had one of the rarest medical conditions in the world.  This is a remarkable story of how 4-year-old Ciara changed the lives of her adoring parents Lori and Liam O’Driscoll of Monroe and her one-year-old little brother Aidan.

This family experienced every emotion humanly possible after they learned their daughter was diagnosed with Dravet syndrome, also known as Myoclonic Epilepsy of Infancy (SMEI), a rare and catastrophic form of epilepsy.  There are approximately 700 known cases of this disease in the world and three confirmed cases in Connecticut.

“At first you are in denial,” said Lori, “then you are angry and depressed.  Eventually you accept the situation and make the most of it.” That is exactly what the O’Driscoll family has done.  They have become totally immersed in the daily management of their daughter’s medical condition and Lori chose to stay at home full-time to care for her daughter.  But the O’Driscolls channeled their positive energy and  loving concern for others in similar situations to another level that is simply incredible.

“We organized ‘Ciara’s Butterfly Bash, A Benefit for Children with Dravet Syndrome’ on Saturday, April 25 in Greenwich to help raise funds for researching a cure for Dravet syndrome as well as to assist the financial needs of families who cannot afford the high cost of medications or do not have adequate health coverage,” said Lori. “Two of the medications that work with Dravet syndrome are not yet on the FDA approved list and cost upwards of $1,300 a month out-of-pocket.  In most cases, one parent cannot work because he or she needs to monitor the child 24 hours a day.”

Here is the O’Driscoll’s remarkable story of a family that has gained renewed strength as they overcame one medical challenge after another. They have taken an intense medical journey together; this sweet little girl has seen more doctors than most people do in a lifetime!  Yet, she, like her parents, has never given up hope. Ciara can easily light up a room with her infectious smile and warm the hearts of others with her loving hugs.

In Dravet syndrome, seizures present themselves in the first year of life in an otherwise typically developing child, persisting in frequency with maturation.  Ciara is a classic case and experienced her first seizure at 5 ½ months old.  She then progressed to 100 drop seizures a day and was eventually diagnosed with Dravet syndrome before her first birthday by Dr. James McGrath and Dr. Laura Ment at Yale. Dravet syndrome is considered to be the most severe type of epilepsy.

The family then connected with ARCH in Greenwich and then Child Family Health Network in Shelton for birth to three services, which were a huge asset with Ciara’s speech.  By age 3, Ciara only said 12 words. Developmental delays often appear during the second year of life, although the course and severity varies among affected children.

All that changed when Ciara entered the Early Childhood Intervention Center at Monroe Elementary.  “In a few months,” her mom noted, “Ciara increased her vocabulary to 200 words. The progress was remarkable.”  Ciara currently attends this public preschool under the watchful eye of a full-time LPN and her vocabulary has grown to between 400 and 500 words.  She even can say a complete sentence, which her family was told she could never accomplish.  The teaching staff has been phenomenal!

In Dravet syndrome, seizure control can be difficult, with many types resistant to current medical therapies.  Before the family connected with expert Dr. Linda Laux in Chicago, Ciara had tried and failed seven different medications to control her seizures.  Dr. Laux, who treats 80 children with Dravet syndrome, put Ciara on the Ketogenic Diet and within two weeks her drop seizures were remarkably reduced.  This low carb, high-fat diet has resulted in a more manageable occurrence rate – about one seizure a week.

Children with Dravet syndrome like Ciara may experience photosensitivity, are easily over stimulated in crowds, overreact to extreme heat and are more suspectible to illnesses. Ciara is making outstanding progress through a regimen of intensive therapies that includes: occupational therapy, physical therapy, speech therapy and aquatherapy.
She is regularly monitored by two neurologists, a dietician, nephrologist, gastrointestal specialist and optometrist.

Hope is on the horizon. Come support Ciara and others like her on Saturday, April 25. Ciara’s Butterfly Bash is the brainchild of her mother Lori O’Driscoll and family friend Lauren Winter of Stamford.  These enthusiastic co-chairs have organized an impressive first-time benefit for children with Dravet syndrome.  All proceeds have been earmarked for the IDEA League (International Dravet Syndrome Epilepsy Action).

Founded in 2005, the IDEA League aims to promote awareness of Dravet syndrome and the need for early diagnosis which will result in appropriate treatment of the disorder.  The IDEA League strives to support research towards finding a cure and provides invaluable support to affected individuals and their families.

This unique gala will take place at the Hyatt Regency Greenwich from 6 to 11 p.m.  Tickets cost $150 per person and reservations are suggested by April 5, since seating is limited.

“We anticipate a sold-out event with 150 supporters,” said Lori O’Driscoll. “This year we hope to raise $40,000 for the IDEA League and next year we will definitely book a larger ballroom to accommodate even more guests.”

The evening features a cocktail hour with live Irish music performed by fiddler P.V. O’Donnell from Donegal, a video about their daughter Ciara, a silent auction, dinner and dancing to a disc jockey.  During the gala, Dr. Paule Couture of Pediatric Center in Stamford, will be honored for her work in managing Ciara’s intensive medical treatment.

Sponsors, and gala program tribute and business ads are being accepted until April 1.  For ticket, sponsor or ad information, please contact Lori O’Driscoll at 203-249-3733 or visit www.butterflybash.com.

We can only hope for a better tomorrow with your help. As the Irish saying goes, “May the road rise to meet you. May the wind be always at your back. May the sun shine warm upon your face.”  And someday, may a cure shine down on Ciara as she flies freely in the wind with the butterflies.