Big Bikes event riding for 6-year-old with rare chromosome disorder

It’s an annual ride meant to help families fulfill dreams for children who struggle with health challenges.

The annual Big Bikes for Little Tikes ride, put on by 95.7 The Rock and the Rock Foundation, is going all out 6-year-old Lilly of West Salem this year. To take part, register here.

Lilly was born with holes in her heart. She had two open heart surgeries just weeks after birth. She also has an extremely rare chromosome disorder. She’s only the seventh child to have been diagnosed with the disorder and doctors are unsure of her life expectancy.

Her parents, Terry and Joan, help her through daily challenges.

“You try to make her life normal but it’s hard,” Lilly’s mother Joan path said. “We live one day at a time at our house because we never know what the next day is going to bring.

“The first couple of years of her life she was in and out of the hospital. I would say nine or 10 times a year, we were in the hospital.”

Lilly, a first grader at West Salem, has frequent seizures and has spent much of her young life in and out of hospitals. Despite the hardships, she loves anyone she sees, mom says.

“She loves to be with her friends at school,” Joan said. “She’s outgoing. She’ll walk up to anybody. She just started walking last August, and she’ll walk up to anybody.”

Joan said they want to take Lilly to Disney World — and idea for that came after a recent adventure.

“We went to Texas at Christmas time and my step daughter and I took her on a couple of rides and she just loved it,” Joan said. “She just thought that was the best thing. That was the first time she’d ever been on any rides.”

And that’s where Big Bikes comes in. With the proceeds from Saturday’s ride, Lilly’s family plans to take her to experience the awe and wonder of Disney World.

The Big Bikes ride and a post ride party take place at the American Legion in Onalaska on Saturday. Click here to join the event.