Legg-Calvé-Perthes disease: Landon’s story
Legg-Calvé-Perthes disease: Landon’s story
Landon was 6 when he began complaining about knee and shin pain and developed an occasional limp. His pediatrician said it was probably just “growing pains” and not to worry.
A month later, when basketball season started – Landon’s favorite sport – he refused to go to games and wouldn’t say why. His limp persisted, and Landon’s mom, Jessica, knew something was wrong.
She asked her husband, Chris, to take him to Urgent Care at Children’s Hospital of Philadelphia (CHOP). What they discovered changed the family’s life for the next two years.
A diagnosis and treatment options
“Chris called me as he was leaving CHOP and said Landon was diagnosed with Legg-Calvé-Perthes disease and my heart sank,” Jessica said. “I had absolutely no idea what it was. Chris told me it was a hip disorder and that Landon wasn’t allowed to walk until he saw the specialist the next day. I was crushed. My free-spirited, adventurous and energetic 6-year-old wasn’t allowed to walk.”
A day later, the family met with Wudbhav N. Sankar, MD, an orthopedic surgeon with CHOP’s Hip Disorders Program. Dr. Sankar, a national leader in pediatric hip disorders, explained Landon’s rare condition. Legg-Calvé-Perthes disease causes the ball-shaped head (femoral head) of the thigh bone to lose its blood supply. Gradually, the bone becomes misshapen and doesn’t fit properly into the hip socket (acetabulum). The disease can cause the hip to become stiff and painful.
Dr. Sankar explained the treatment options. For children younger than 6, particularly those who are stiff, doctors sometimes recommend a Petrie cast (a long-leg plaster cast) to keep the femoral head positioned correctly in the hip socket and to keep the child off their feet. For children older than 8, clinicians often recommend surgery (femoral osteotomy) to cut the ball of the thigh bone and tilt it into a better position within the hip socket.
“With Landon being 6½, he was in the gray area and the decision was ultimately left to us,” Jessica said. “Dr. Sankar said there was no data showing one option had a better outcome than the other in this age range.”
Landon’s parents discussed the options with Landon. They decided to go with the Petrie cast, which would immobilize Landon’s hip joint as it healed.
During that first visit with Dr. Sankar, the family also met with Children’s Hospital Home Care to order the equipment Landon would need – specifically a large wheelchair so he could move around safely after surgery – and the family could go on their planned trip to Disney World a few days later with Landon using the smaller child-sized wheelchair CHOP provided.
“Landon being in his wheelchair for Disney was an unexpected turn of events, but in hindsight, I’m so thankful we had that trip when we did,” Jessica said. “Landon had an amazing time despite his new ride and could participate in many different activities.”
Casting to treat Legg-Calve-Perthes disease
On Feb. 17, 2023 – a month after Landon’s diagnosis – Dr. Sankar performed the casting procedure to position Landon’s thigh bones into his hip sockets at the proper angle. The casts extended from his upper thighs to his ankles, with a wooden bar positioned between his legs to maintain the best bone alignment.
The goal of the Petrie cast is to preserve the shape of the ball at the top of the thigh bone, prevent deformity and maximize the long-term function of the hip socket. By positioning the ball deep within the socket, the socket acts as a mold to keep the ball round.
The first 6 weeks in full-leg casts were some of the hardest for Landon. Due to the size of his casts and positioning of his legs, Landon had to use an adult-size wheelchair that was big and heavy, preventing him from wheeling himself around. Thankfully, his family helped at home, and a friend pushed him around at school.
Landon’s teacher included him in normal school activities as much as possible – with modifications. On Rare Disease Day, she and Landon read a story about Legg-Calve-Perthes disease aloud and discussed it on camera to share with his entire school. At home, his parents often divided duties with one taking Landon’s two brothers out, while the other stayed home with Landon.
It was frustrating for Landon, but he learned to adapt. He enjoyed scooting around on the floor, sliding after his brothers or asking his parents to time him as he “raced” around the house. He also played card games, board games and many video games with family and friends.
First step in recovery
After 6 weeks, the hard casts were removed. But Landon had to remain in his wheelchair for another 5½ months for rehabilitation. He attended regular physical therapy at CHOP and closer to home, where he could swim and bike to recondition his muscles. At night, he had to continue wearing leg braces to retain the correct position for the leg and hip bones, making it difficult for Landon to get comfortable and fall asleep. With determination, pep talks and lots of video games, Landon made it through the most challenging part of his rehab.
Finally, on July 31, 2023, after months of therapy and support, Landon was cleared to start walking.
“That day really stands out to me because at first, he was very hesitant to walk on his own,” Jessica said. “After our appointment at CHOP, we went to the park and his younger brother, Oakley, took his hand and encouraged Landon as he took his first steps. It meant he was starting to heal.”
After months in a wheelchair, when Landon’s feet hit the ground, he wanted to run.
“I felt like a broken record when Landon was out playing, always saying ‘Landon! Walk!’” Jessica added. “It was important to make sure he followed the doctor’s orders to have the best possible outcome.”
Breaking free, but with limitations
In November 2023, Landon was medically cleared to run and to stop wearing leg braces at night. Three months later, doctors said he could participate in a spring sport but reminded him to rest if he experienced pain.
Landon was thrilled to begin playing lacrosse in Spring 2024. But he tired easily and didn’t get as much play time as he’d hoped. His body needed more time to recover.
The following months were filled with milestones and a few setbacks as Landon learned how much he could do with Legg-Calvé-Perthes disease. In June 2024, he went camping. In July, he and his family went on a beach vacation. Each time, he pushed himself to do everything his peers did, and quickly learned his body still had some limits.
In August, Dr. Sankar told Landon news he didn’t want to hear: He was not cleared to play soccer that fall. However, Landon was allowed to continue taekwondo and join the dive team.
“Landon was crushed he couldn’t play soccer, but we tried to refocus him on what he could do,” Jessica said. “And he was excited to learn how to do a backflip off the diving board.”
In November, Landon was again cleared to participate in contact sports. Last winter, he played basketball and went skiing – things he had desperately missed.
More good days ahead
In the past year, Landon has graduated from third grade and is embracing every active adventure he can – from skiing to diving, from basketball to soccer, from lacrosse to taekwondo. In fact, he recently earned medals in traditional and combat sparring at a taekwondo tournament.
In Spring 2025, Landon tried playing lacrosse again. While he struggled to keep up at first, he was soon making solid plays, dodging, passing and picking his way across the field.
In May, Landon scored his first goal. His family erupted in cheers and Landon gleefully performed Portuguese soccer player Cristiano Ronaldo’s signature victory move – a shout followed by a distinctive jump and spin to celebrate.
“Landon is a kid that never gives up, and this experience truly showed us that,” Jessica says. “He’s so happy to be back doing the things he loves.”
This experience has had a profound effect not just on Landon, but on his entire family. They are all deeply thankful to Dr. Sankar and the team at CHOP for supporting them through the worst of Legg-Calvé-Perthes disease.
Jessica’s advice for parents of newly diagnosed youth?
“Make it your number one priority to do everything to help your child when it counts: Go to physical therapy. Keep up with their exercises and stretches at home. Take your child swimming and follow the protocols.
“It’s hard – and there will be tears, extra tech time, exhaustion, breakdowns and burnouts – but it will be worth it,” Jessica adds. “Your child will struggle, but they will also heal.”