Support Tom Tom's Fight Against Legg-Calve-Perthes

Tom Tom’s Legg-Calve-Perthes Disease Journey

After a grueling five months of endless doctor visits, multiple X-rays, and an MRI, we finally have an answer, though it’s not the one we hoped for. Our vibrant, lively, and wild child, Tom Tom, has been diagnosed with Legg-Calve-Perthes Disease (LCPD). This has been a devastating turn of events, especially for a child as active and spirited as Tom Tom. The pain, which he endures daily and especially during the nights, has brought an abrupt halt to the energetic activities he loves so much.

LCPD is an incredibly rare disease, affecting only 1 in 20,000 children. The disease occurs when the blood supply to the femoral head—the ball of the hip joint—is inexplicably cut off. This loss of blood flow causes the bone to die and collapse, fragmenting and losing its natural round shape over time. The entire process of bone death, collapse, and regrowth can stretch over several painful years.

As the bone regrows, it often fails to regain its original round shape, which means it may not fit properly into the hip socket. This misalignment can cause lifelong issues, including chronic pain, limping, a higher risk of early-onset arthritis, and an increased likelihood of needing hip replacements at a young age.

The first step on Tom Tom’s road to recovery, now that we have a diagnosis, is to begin physical therapy. This therapy is crucial for restoring the range of motion in his hip joint, reducing inflammation, alleviating pain, and protecting the joint as it heals. Unfortunately, finding a pediatric physical therapist in our area around Roseburg has proven to be a significant challenge. The earliest appointments are booked until late November, and Tom Tom’s doctor has urged us to seek treatment much sooner. This has forced us to travel to Medford, Oregon for therapy and other necessary medical appointments.

The situation has placed a tremendous burden on our family. Tom Tom’s parents have had to miss work frequently to ensure he receives the care he needs, which has strained their finances to the breaking point. We are reaching out for your help to cover the costs of transportation, possible lodging during his treatments, and to support his family in keeping their home while they miss work to care for him. Tom Tom has a long and challenging journey ahead, with many more doctor visits, X-rays, and treatments to come.

Your support can make a world of difference in ensuring that Tom Tom receives the care he needs without his family facing financial ruin. Please help us give Tom Tom the best chance at a pain-free future.

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