Those traveling past Henry Clay Boulevard in Ashland on Sunday likely saw the hand-lettered signs pointing the way to “Alana’s Benefit.” By 11 a.m., the Ashland Optimist Complex down the road was bustling as members of the surrounding communities set up for an event to raise money for the medical fund of 15-month-old Alana Barner of Ashland.
The event consisted of a luncheon with live and silent auctions. Alana’s parents, Bart Barner and Patti Cuddihee-Barner of Ashland were there with her 5-year-old brother, Wyatt. By noon, the Optimist Club gymnasium was nearly full of friends, family members and community members who had come to show support.
The Barners had never heard of Hurler’s syndrome, but when they took Alana to a pediatric cardiologist after her physician noticed a heart murmur on a routine visit, their lives changed.
“We never had any idea. Up until the day somebody said something to us, we thought she was perfectly normal,” Cuddihee-Barner said.
She recalled finding out that the cardiologist, Guy Carter of the MU Health Care System, suspected that Alana had Hurler’s syndrome when he first noticed that she had facial features characteristic of the disease.
“It took him five minutes to get out of his mouth what it was,” Cuddihee-Barner said.
Hurler’s syndrome is a rare disease in which the body lacks an enzyme needed to break down long sugar chains as a part of its normal processes. As a result, portions of these chains remain stored in the body’s cells, causing symptoms such as joint and skeletal problems, cloudy corneas and heart valve problems.
If patients go untreated, “neurologically, they eventually develop mental retardation,” said Cindy Lorentz, a genetic counselor at Fairview-University Medical Center in Minneapolis, Minn.
Lorentz estimated that Hurler’s affects one in 100,000 infants.
After hearing the tentative diagnosis, the Barners had to wait for a blood test with a geneticist to confirm that Alana had the disease. When a test came back showing that she had none of the enzyme, her doctors were certain.
“I spent the next 24 hours on the Internet,” Cuddihee-Barner said of the time spent waiting for the final diagnosis. “What I read was absolutely devastating.”
Untreated, children with Hurler’s syndrome don’t live past the age of 10, she said.
In her searches online, Cuddihee-Barner found information that led her to physicians at the University of Minnesota who were working on new treatments for Hurler’s syndrome. She contacted them, hoping they could treat her daughter.
“The doctors there eat, drink and sleep this stuff,” she said.
Sunday’s benefit grew out of an earlier effort made by nearly 40 colleagues of Alana’s father, who works for Boone County Public Works.
“Everybody gave some,” Barner said of the thousands of dollars raised so they could travel to Minnesota. “I think they collected something from every business in Ashland.”
In Minnesota, Alana was given the first in a series of enzyme replacement infusions in the hope that this would halt or reverse some of the Hurler’s symptoms she exhibited.
“Within two weeks of her first enzyme treatment, she was eating,” Cuddihee-Barner said. This was a dramatic change from the Alana who gagged violently every time she tried to eat because of enlarged tonsils and adenoids.
“We’re trying to make enough money so that they’re not financially burdened while they’re emotionally burdened,” said Cindy Glascock, who worked in the kitchen during Sunday’s event.
Glascock helped coordinate the benefit.
The ingredients for 1,000 plates of food and all auction items were donated by community people, businesses and organizations so proceeds would go exclusively to Alana’s medical fund, she said.
“I hate to see a child in pain,” said Wick Jacobi, the Ashland branch manager of First National Bank. “Anything I can do to relieve that just makes me feel better.”
Alana’s maternal grandparents, Robert and Mary Pat Cuddihee, came from St. Louis.
“It’s hard to find words that express the joy — the beauty of people,” Mary Pat Cuddihee said. “You don’t hear about that often enough and the extent of it.”
Alana and her family are preparing for another trip to Minnesota for the transplant of stem cells donated from an umbilical cord.
Cuddihee-Barner remembers being confused when she heard the term “stem cells.” The stem cells involved in the procedure are different from the controversial embryonic stem cells and can be obtained through umbilical cord blood or bone marrow donation.
Alana’s doctors hope these cells, once inside her body, will travel throughout her system and produce the enzyme she lacks.
Cuddihee-Barner urged pregnant women to donate umbilical cord blood.
“There’s absolutely no reason not to,” she said. “It will go in the trash can if you don’t, but it could save someone’s life if you do.”
Though volunteers are still determining how much money was raised on Sunday, Glascock estimates that more than 750 plates of food were sold in addition to the money raised by the auction and donations. Plates were $7 for adults and $3 for children.
Alana’s medical fund will allow the family to send Alana and her mother to Minnesota at the end of this month for her transplant and the resulting hospital stay.
“I just think people need to appreciate their children’s health,” Barner said. “Just love your kids every day you’ve got them.”