Stories And Inspiration

Student Celebrates a Victory Over Perthes Disease With First 5K

Submitted by Anonymous on Nov 18th 2014 - 7:00AM. | Perma Link

By Dawn C., mother of Wil, Friedberg Elementary Student

I spent an emotional morning watching my 10-year-old running his first 5K today. Running. Any parent would be proud, as a 5K is an achievement that requires dedication and effort. But this parent is feeling so very blessed.

Just over two years ago, Wil could not lift his left foot more than an inch off the ground. He needed help getting dressed. Try putting your pants, socks, and shoes on without lifting your foot more than an inch. He could not get into the bathtub unassisted. He could not walk sometimes without dropping to the floor, screaming in pain. He often had to be carried. It hurt to sit, to stand, to lie.

This time two years ago, we started traveling to Baltimore regularly. Wil had his first of a couple of surgeries to treat Perthes disease. His femur bone had died and about half of it had crumbled away. He had just had lots of tiny holes drilled into a dead femur head. He had just received a stem cell treatment in the hope that it would jump-start dead bone repair. He had Botox injections in his thigh to help lessen the pain and severity of muscle spasms from the invasive surgery.Go_Far_victory

This time two years ago, he spent a day in a wheelchair, a few weeks with a walker, and wore external leg braces 24/7 for over a year. He had blisters from the leg brace pressure points. He was stared at by nosy adults, asked by kids, “When did you get your fake legs?” He tossed and turned at night because it is hard sleeping in leg braces.

This time two years ago, he yelled out in pain from twice daily physical therapy (PT) at home. The dog had to be crated to keep him from running up and down the stairs in distress, as he heard Wil during PT. We started PT at the hospital two to three days of every week, for two years—300+ sessions of physical therapy. Did I mention PT?

This time two years ago, we wondered if he would ever walk or run without a limp (many days he can, some days he cannot). We wondered if he would ever walk or run again without pain (some days yes, some no). We prayed to God that Wil would not need metal rods inserted through his leg bones to distract his hip and allow him to heal faster. We prayed that he would get through those years without suffering from depression, unable to run, jump, slide, or play sports. Isolated from so many things that his friends and most eight-year-olds could do. We worried and prayed and stretched and prayed. We set alarm clocks to wake up during the night and apply heating pads. We carried him upstairs or anywhere else when it hurt him to walk. And prayed. And prayed.

Today he ran. He ran a 5K. He ran for 3.1 miles. He finished strong, fifth in his peer group—135th out of 1,455 racers, adult trainers included. He averaged 9:26 minutes per mile. I cried. He did not see. I pray.

We are happy to have Wil's story shared, especially if we can create awareness for Perthes disease. We have been told that it is a somewhat rare bone disease and we know that the sooner it is diagnosed, the greater the chances for a better recovery. It can affect any race and any gender, but a large percentage of children with Perthes disease are Caucasian males who are small for their age and very physically active. One of the first symptoms is often unexplained pain in the thigh, knee, or groin area. Our son went for almost six months undiagnosed. Any awareness that we can create by telling his story may help another parent receive a quick diagnosis and early treatment for their child. Wil is an amazing young man and we feel blessed beyond measure that he has received outstanding treatments and is able to run a 5K so soon after such a diagnosis! —Dawn and John

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