CEDAR RAPIDS — Though she’s 7 years old and learned how to, Carly Allen hasn’t ridden a bike, independently, for two years.
She can sit in the seat and hold on to the handles as her mom, Lisa, pushes her around the yard. But that’s not the same.
Carly has Sotos syndrome, a rare genetic disorder. Characterized by excessive growth early in life, the condition also results delayed motor development and low muscle tone among other symptoms, which make riding a traditional bike impossible for her.
Though Carly and her family now know what is behind varying symptoms, arriving at the diagnosis took years and bit of detective work.
Carly was born four weeks premature. She weighed 10 pounds.
At five weeks old, she was referred to Mayo Clinic, where she was diagnosed with a heart defect and an overly narrow anal canal. She had three surgeries to correct those issues, but Lisa says she could tell something still wasn’t right with her daughter.
“Every year, she would grow 4 to 6 inches,” Lisa says.
People said she was growing so fast because she was a preemie. But Lisa says there were other clues that something was different with her middle child.
“Her teeth started to rot, she has an awkward gait — she just couldn’t walk straight — and she had to have tubes put in her ears,” Lisa says. “Every year, there was something and she continued to grow.”
Years of doctor appointments, therapy sessions, hospital stays and medical tests, including an MRI, finally resulted in a diagnosis earlier this year. Lisa says she reached for her computer moments after doctors told her Carly may have Sotos syndrome, which affects 1 in 10,000 to 14,000 newborns.
“The first picture that appeared on the screen, I said ‘That’s Carly,’” Lisa remembers. “Out of 81 characteristics, she has 30.”
Sotos isn’t life-threatening. Carly will have a normal life expectancy. She will continue to grow at an increased rate until puberty. Carly is expected to be more than 6 feet tall when she stops growing.
The initial abnormalities of Sotos — delayed motor, cognitive and social development; low muscle tone; and speech impairments — should resolve as Carly ages.
That’s years from now, though. Now all she wants to do is ride a bike with her older sister, Raeann.
“We’ve exhausted bubbles and sidewalk chalk as outdoor entertainment,” Lisa Allen says.
“Right now, she just watches a lot,” Raeann, 9, says.
An adapted bike, which resembles an adult-sized tricycle with each wheel the same size, would allow her to join in.
Northtowne Cycling and Fitness has one in stock and Lisa says they will service the bike and fit it to Carly as she continues to grow. The price tag of $600, however, is more than Lisa can afford.
“We started calling around and we decided to put together a huge fundraiser so we can buy the bike,” Raeann says.
The fundraiser will be held from 5 to 9 p.m. on Monday, Sept, 23, at Pizza Ranch, 2450 Westdale Dr. SW.
Pizza Ranch will donate 15 percent of a customer’s bill to Carly’s bike fund if they bring in a fundraiser flyer. Flyers are available at Hiawatha Elementary School, where Carly is in first grade.
Team Carly volunteers will bus tables on Monday and all tips will go to the fund. Donation jars also will be at the restaurant.
“I think it’s going to be nice that she’s finally going to get a bike,” Raeann says.
When asked what color of bike she’d like, Carly whispers “Green.”
Lisa says she’s overwhelmed by the support of the community, including everyone at Hiawatha Elementary.
“I’m thrilled that she may be able to get back on a bike this year, but it’s also really good that we’re getting the word out about Sotos because it’s so rare,” Lisa says. “We talk a lot about this at home. We don’t need people to feel sorry for Carly. We just need them to understand.”