New Richmond first grader battling degenerative hip disease
Most people have never heard of Legg-Calve-Perthes disease.
First grader Gabby Tesar was diagnosed with Legg-Calve-Perthes disease several months ago. The disease is a childhood condition that affects the hip, where the thigh bone (femur) and the pelvis meet in the ball-and-socket joint. There is no known cure for the disease, but research is ongoing to find ways to deal with the disease so affected children can lead a normal life.
Tesar underwent surgery on March 2 at Boston Children’s Hospital. A plate and screws were inserted into her hip, where they will stay for a year. At that time, surgery will be performed to remove the plate and screws and see how the bone is reacting to treatment.
Gabby is the daughter of Steve and Susan Tesar. Steve is a third grade teacher at Hillside Elementary and an assistant boys varsity soccer coach. Like her dad, Gabby has developed a love for sports at an early age. Whatever’s been available to kids her age, whether it’s T-ball, late summer soccer or little dribblers basketball, Gabby has dived in with the exuberance you expect from a 7-year-old.
Gabby is scheduled to need a wheelchair for six weeks following the surgery. The goal is to have her walking without an aid by May 1. She’s been forced to use a walker or wheelchair since last October.
The next few years will be challenging for Gabby. There will be constant pain in the hip joint. She will not be able to run or jump for 3-5 years, from what her parents have been told. Steve Tesar said that Gabby loves swimming and will swim several times a week once he is cleared by her doctors. Her parents plan to try to find other sports where she can concentrate her energy, looking at archery and horseback riding as possibilities.
While Gabby will have to be careful to protect her hip, her parents realize that her love for sports will need to be met.
“Life’s not stopping,” Steve said. “We’ve got to adapt and find out what she can do.”
There was little forewarning that Gabby was developing Perthes. She began suffering intermittent pain in different areas of her leg. It was soon found that the pain was being caused by her body compensating for the decaying of her hip bone. She underwent an x-ray in late September, which gave the answer on what was causing the problem.
“The x-ray showed a straight black line, signifying her hip was breaking down,” Steve said.
After Gabby was diagnosed at Children’s Hospital in Minneapolis, the Tesars then sought a second opinion at Mayo Clinic. When those two opinions conflicted, it was recommended that they go to Boston Children’s Hospital, considered the national leader in the study of Legg-Calve-Perthes disease. The doctors at Boston told the Tesars that surgery would be the best route to follow to help Gabby lead a normal life. She had a preliminary surgery on Feb. 2, before going the femoral osteotomy on March 2. The surgeries were done at Gillette Children’s Hospital in St. Paul.
“The goal is to make it to age 50 without her needing hip replacement,” Steve Tesar said.
Perthes goes through four stages. The femoral head will have to break down and then grow back.
There is no known cause of Legg-Calve-Perthes disease. It is not believed to be genetic. Steve Tesar said it appears to occur more often in children who are active and that one child in every 12,000 will be affected. It is more common in boys than in girls.
A fundraiser was held on Feb. 20 for Gabby, with the New Richmond varsity girls basketball team hosting the event, which included the Little Dribblers performing at halftime. The efforts that night raised $769 for research. The funds went to the International Perthes Study Group, with all the funds going directly to research. There are 45 doctors worldwide who are taking part in the study.
The Tesars said they are very appreciate of the generosity of the New Richmond community, through the fundraiser and the numerous other acts of kindness they’ve received.
While this experience has been gut-wrenching for her parents, the Tesars have been amazed at how resilient their daughter has been throughout the experience.
“She’s not complained once. She’s got a great attitude,” Steve said. “She’s an easy-going kid. She goes with the flow.”