Girl’s rare disease starts quest to make a difference
When Kerry Hughes and Lori Butler first met while dropping their children off at their Lake Zurich neighborhood bus stop five years ago, they had no idea where their journey would take them.
The two have linked up with a program called the Global Genes Project, which raises awareness of the more than 7,000 rare diseases in existence. Most of the rare diseases are found only in children younger than 13.
“We’re women who want to help children who have no voice,” Butler said. “We understand what it’s like to have children that age and empathize with parents who will lose theirs.”
Butler’s children are Graham, 13, and Nolan, 7. Hughes’s children are Nathan, 12, and Olivia, 9.
For Hughes, rare disease is personal. Her friend and former co-worker Sara Kennicott’s 6-year-old daughter Bridget has Batten disease. It affects the nervous system and causes seizures, loss of sight and motor skills. The disease is ultimately fatal.
Hughes said Bridget is like a niece to her.
Sara noticed developmental delays in Bridget’s speech when she was 2. Four years later, the girl who seemed perfectly healthy at birth is tube fed and uses a wheelchair.
“It’s so hard for a while. You just are numb and you don’t know what to do,” Hughes said.
On July 23, she and Butler hosted their second event, “Rock Rare Disease,” to raise awareness and funds to fight Batten disease. The event was at Trace Wrigley Bar in Wrigleyville.
The event benefited the Kennicott family’s charity, Hope 4 Bridget. The organization funds research and helps families of other children with Batten disease pay for medical supplies.
“It was wonderful,” said Sara Kennicott, a reading specialist who has taught in Barrington Unit District 220 for 17 years and lives in Carpentersville. “We were very grateful for what Lori and Kerry did.”
The benefit concert drew a crowd of 125 and raised more than $5,000 for research.
The money came from ticket sales and corporate sponsors: CorDynamics, a cardiovascular research firm from Chicago, and Lundbeck Pharmaceuticals in Deerfield, a company looking for a cure for diseases like Bridget’s.
Two local bands donated performances, Tanglewood Tales and Dr. Flint’s Nitro Burnin Voodoo Rummies.
Jesse Malin and his band, St. Mark’s Social, headlined the show. Malin talked to the audience about Batten disease between his sets.
Hughes and Butler said they selected a concert for their second event because music is one of the few things Bridget still responds to because she can no longer see or talk. Their first event was last November at Kohl Children’s Museum in Glenview.
Even though Bridget is bedridden, blind and can no longer move voluntarily, the Kennicotts want to continue to raise money for their cause.
“In my eyes, and my wife’s eyes, it doesn’t stop with our daughter. This is a lifelong search for a cure,” Dave Kennicott said. “I don’t think a cure is that close … there’s too much damage already done.”