Family's perseverance leads to help for genetic disorder

Trying to rationalize why young Lizzie Reilly was not adapting to school as quickly as other children her age didn't seem so mysterious to her teachers in Villa Park. They figured that because Lizzie was adopted in the Philippines and brought to this country by Nancy and Bob Reilly, her early childhood experience, which lacked love and adult support had to be a main reason.

Nancy Reilly wasn't so sure. She had heard good things about the special education programs in St. Charles schools and the family moved the summer before Lizzie entered fourth grade. Finally, a teacher made a suggestion to determine why school was such a struggle for Lizzie.

"During our first parent-teacher conference at Lincoln Elementary, her teacher, Kris Anderson, asked if anyone had ever suggested that Lizzie may be autistic," Nancy said. "I thought of 'Rain Man' and I knew that was not Lizzie, but Kris went on to explain that if we knew why Lizzie had such difficulties, there would be more special ed available."

It resulted in a series of tests on Lizzie, which finally came back with an explanation. Lizzie was suffering from Fragile X Syndrome, a rare genetic disorder that causes developmental delays in children ranging from mild to severe.

Nancy and Bob Reilly, and their circle of friends and supporters, went on to research Fragile X Syndrome and how it affects children, and also how it can develop into a neurological disorder in adults.

Six years later, the Reillys can now point to their support group as "Team Lizzie" as they prepare for their fourth fundraiser for Fragile X research and education. It has grown since beginning as small sessions in the Reilly home with vendors, such as Tastefully Simple, offering to donate a portion of proceeds to the Fragile X Foundation.

The fundraiser takes place from 10 a.m. to 4 p.m. Sept. 25 and noon to 3 p.m. Sept. 26 at the Geneva History Center, which has more space available for what has now expanded to 10 vendors and various other raffle gifts.

"I decided that something had to be done to bring this disability to the attention of as many people as I could," Nancy said. "I felt I owed it to Lizzie and those like her. She deserves to have a voice out there trying to bring awareness and find a cure hopefully in her lifetime."

Nancy said Lizzie has steadily improved since her diagnosis and is becoming more outgoing and aware of her potential problems as she begins her sophomore year at St. Charles East.

Ready to hit floor: And who says that ABC-TV's "Dancing with the Stars" has cornered the market on grand announcements of competing dance teams?

The Geneva Cultural Arts Commission used the Festival of the Vine setting again Saturday night to announce the 2011 dance teams that will compete in the annual fundraiser Feb. 5 at Eagle Brook Country Club.

The teams are: Amanda and Adam Law, who is principal at Heartland Elementary School; Nancy and Ralph Dantino, who is Fifth Ward alderman; Geneva Academic Foundation president Anne Cesarone and her husband Matt; Jeanne and Donald Cummings, of the Geneva Library Board; Jane and Peter Cladis, a physician with Fox Valley Family Physicians; and Therese and Steve Davison, owners of three 7-11 stores and active members of the Geneva Sports Boosters.

It's a booking: For those whose interest was piqued by my recent column item about former "American Idol" contestant Leslie Hunt's new progressive rock band, District 97, there may be a chance to see them in action locally.

Band members sent along a note saying they are booking a show on Oct. 8 at Chord on Blues in St. Charles, about a month or so after the release of the band's CD titled "Hybrid Child."

I may have impressed the young folks in this band, who said some of their music emulates King Crimson, by telling them I saw King Crimson in concert in 1973 at the Arie Crown Theater.

And I would be giving my age away just as badly if I told them I certainly remember when Chord on Blues was a place called The Purple Carriage in the early 1970s.

The silver lining: With all of the gloom and doom about the economy and jobs outlook for the past few years, it is always refreshing to hear a person who has a positive outlook on the situation.

When I visited with Hyatt Hotels senior pastry chef Alain Roby last week to make mention of his "chocolate kitchen" project in downtown Geneva, he had an interesting take on the work world.

"The economy has been tough on everyone, but I believe that it has made us better managers, with better work systems, and better employees," Roby said.

And for those who are still struggling to find work, Roby feels strongly that as we slowly come out of this recession, we will be stronger on the other side because the end result will be better companies, more small businesses, more customers and more jobs.

Long-time Genevan: When 89-year-old Tom Peck passed away last weekend, historians in Geneva were quick to point out he had lived in Geneva continuously since day one of his life - longer than any other resident.

I thought maybe 91-year-old Merritt King could lay claim to such a title, but Merritt reminded me that he moved to Geneva with his family from Milwaukee when he was 8 years old in the late 1920s.

dheun@sbcglobal.net