Charity dinner raising funds for rare disease research

A charity dinner is set for May 21 to raise funds and spread awareness for Ring14 Syndrome, a rare genetic disease that causes a number of debilitating symptoms, including severe epilepsy.

The dinner will be held at the Willows, 11200 W. County Rd. 127, with appetizers and a silent auction beginning at 6 p.m., and a dinner and program at 7 p.m. Individuals can purchase tickets for $50 each, and families, up to five members, can purchase tickets for $150. Table sponsorships are also being sold for eight people at either $500 or $1,000.

Ring14 Syndrome is particularly close to the DeWoody family, who is hosting the event, as the disease affects their 13-year-old daughter, Marie DeWoody.

About two weeks after Marie DeWoody was born in 2005, her mother could tell something was not quite right — that suspicion was confirmed a few months later when her daughter had her first of countless seizures.

Her mother, Yssa DeWoody, rushed her daughter to a children’s hospital, where she was diagnosed with Ring14 Syndrome, a rare genetic syndrome that occurs when the 14th chromosome is fused into a circle, causing a number of symptoms, including severe epilepsy.

“Marie started having seizures when she was 3 months old and has never gone more than two months without a seizure,” Yssa DeWoody said. “Our week is just scattered with them.”

Since her daughter first began having seizures, she has been keeping yearly calendars, circling the days which her daughter has dealt with a seizure. That number has reached into the thousands at this point.

When her daughter was first born, there was little research into the disease, only a couple of papers written, and no support group. When her daughter was 2, Yssa DeWoody flew to Italy to meet with another mother who just founded the first nonprofit Ring14 organization, Ring14 International, in 2002, and Yssa DeWoody co-founded her own U.S. branch of the organization, Ring14USA, in 2011 with another mother to help fund research for the genetic syndrome.

Ring14 International, which Yssa DeWoody is this year’s President of, uses their funds to fund research into the disease. They have a bio bank to provide samples for researchers, and hold research workshops, where they invite scientists in to brainstorm new research initiatives. They also provide 50,000 Euro grants to scientists, funding at least one every year, for research.

The disease causes more than just severe bouts of epilepsy. It also causes language acquisition problems. Marie DeWoody used to be able to speak a few words when she was around 3, but her mother said since then that ability has left her as the seizures have taken their toll.

“On a good day, she’s actually quite expressive and quite charming,” Yssa DeWoody said. “You would be surprised how much these kids communicate without words. She can be completely different depending upon where in her seizure cycle you find her.”

Marie DeWoody is also affected by neuromuscular scoliosis, in which her muscles force her back to misalign, and her mother said they are looking at getting her surgery to help sometime this year.

Yssa DeWoody said the disease will affect her lifespan, but the prognosis is still unclear. Of the 20 Americans who have been diagnosed and the 200 around the world, she said there are a couple with the disease who have reached 20 and one who has reached 30.

“I can promise you, we consider each day and every year a blessing with her,” she said.

Despite their daughter’s struggles, the DeWoodys said they continue to be amazed by her sweet nature and resilient spirit, and consider her one of their greatest blessings and are thankful to be her parents.

With two more daughters, ages 17 and 19, Yssa DeWoody said they have all learned to be flexible, as they always have to be prepared for another seizure. She keeps an audio/visual monitor with her at all times and has a watch to alert her if her daughter is having a seizure, but she said she can usually wake herself up from hearing the bed shake before the watch even alerts her.

“The terrible thing about epilepsy and the terrible thing about Ring14 is you cannot plan your day,” she said. “It’s not a respecter of vacations. It’s not a respecter of important events like soccer tournaments or graduation night or any of these things.”

She said that oftentimes during events, her or her husband, Andrew DeWoody, will have to stay behind to watch Marie DeWoody while the other parent is at one of their daughter’s events. But she said her other daughters have learned to be flexible about it.

“Having her as my sister has probably been the best thing that’s happened,” Taylor DeWoody, Marie DeWoody’s 19 year-old sister, said. “It makes you really appreciate everything. There’s so many little instances of beauty that come through her.”

Taylor DeWoody attends Rice University, and based her college decision on her sister so she wasn’t too far, but said it can still be stressful sometimes.

“The worst parts are the helplessness,” Taylor DeWoody said. “I wish I could do something but when she’s having a seizure, there’s not much you can do except for sit there and hold her hand.”

Marie DeWoody takes three different anti-epilepsy medications, and also has emergency medication when she’s having seizures, but Ring14 causes seizures that are drug-resistant. Yssa DeWoody said they have tried around 20 to 30 different combinations of medications over the years.

Yssa DeWoody stressed that she wants everyone to know the prevalence of not just Ring14 syndrome, but rare syndromes in general. There are more than 7,000 rare syndromes, affecting more people as a whole than cancer and AIDS combined, according to globalgenes.org.

Those who wish to attend the event can RSVP and purchase tickets at ring14usa.com under upcoming events, and those who are unable to attend can still donate through the website as well.

“We hope to turn it into a celebration of life and make everybody feel very good about the money that they’re spending on this,” Yssa DeWoody said.

Purchase tickets HERE.