Rare genetic disorder left Liam Feeley missing large bones in his arms
Tuesday, November 25, 2014

(Editor's Note: Liam Feeley is the Kid Captain for the football game Friday, Nov. 28, when the Hawkeyes take on the Cornhuskers at 11 a.m. at Kinnick Stadium.)

Liam Feeley may not be the biggest kid on his baseball, basketball, and flag football teams, but he is certainly the loudest.

The charismatic 10-year-old is always cheering on and firing up his teammates, and he’s proven he can overcome any challenges, on or off the field.

When Liam was born at a Des Moines hospital in 2004, his arms were positioned at 90-degree angles and could not be straightened. Two days later, he was diagnosed with thrombocytopenia absent radius (TAR) syndrome, a rare genetic disorder characterized by the absence of a large bone (the radius) in each forearm.

Ronda and Brett Feeley struggled to find pediatric specialists in the Midwest who could give them the answers they were looking for regarding their son’s unique condition.

“Liam had a lot of doctors stumped,” remembers Ronda.

When Liam was 2 months old, the Feeleys came to University of Iowa Children’s Hospital and met with pediatric orthopedic surgeon Ericka Lawler, who put the family at ease.

“Having doctors at the University of Iowa that truly care about Liam and have the best interests for him at heart is imperative for a parent that has to make important, lifelong decisions for a child,” says Ronda. “It can be very difficult as a parent to have the weight of knowing you are making decisions for your child’s future.”

Liam Feeley's story. Video courtesy of UI Children's Hospital.

Following years of research, Lawler and her team conducted Liam’s first arm surgery when he was 4 years old. A pin was inserted into his right arm for almost eight weeks to keep it straight. After the pin was removed, his arm was in a cast and eventually a splint for several more weeks.

Once Liam’s right arm had been corrected, doctors began the same process on his left arm.

“Our goal was to make Liam functional, to let him live the life and have the quality of life that he wanted,” says Ronda.

TAR syndrome affects each person differently. In Liam’s case, his doctors discovered he is also missing his kneecaps, and the femurs in both of his legs are twisted. Liam has regular checkups with pediatric orthopedic specialists Frederick Dietzand Ryan Ilgenfritz, who have determined Liam will need surgery on both of his legs to improve his ability to walk and run with ease.

The Feeleys are grateful for the knowledge, dedication, and compassion Liam’s UI Children’s Hospital care team has showed their family.

“They focus on Liam not as a subject or a patient, but as a little boy they want to help,” says Brett. “They are just a fantastic team.”

Liam, a diehard Hawkeye fan and aspiring sports announcer, has advice for kids who may have to overcome obstacles like he did.

“It may be tough learning how to do something different, but then it makes it easier,” says Liam.

“He knows he physically looks different, but he doesn’t let it affect his daily life,” adds Ronda. “He does everything that he wants to do.”

To see other Kid Captain profiles, click here.