Willie’s Hip: June 24 Benefit
Via Ed Ward (blogging from Berlin!) – one of the great Austin songwriters, Jon Dee Graham, has a son Willie who’s been a big part of his life and music. Willie has been diagnosed with a rare condition called Legg Perthes, which according to Ed is a childhood form of avascular necrosis of the hip. The head of the femur loses its blood circulation and dies. Willie’s may be facing several years of medical treatment including possible surgery. Austin’s music community is responding with a benefit at the Continental Club on June 24. The lineup is like a who’s who of Austin musical talent: The Resentments, Matt The Electrician & Beaver Nelson, Walter Tragert, Troy Campbell, Kathy McCarty, Steve Poltz, Bob Schneider, Shawn Colvin, The New Hot Damn (Trish Murphy, Kacy Crowley, Renee Woodward, Honky, Ian McLagan & The Bump Band, James McMurtry, Ray Wylie Hubbard, Alejandro Escovedo & Charlie Sexton and (of course) Jon Dee Graham. Chet Himes of Freedom Records is recording the event for a benefit CD. There’s also a silent auction at Gomi, and if you can’t make it but want to help, contributions can be made payable to the Willie Graham Legg Perthes Fund and mailed to: The Willie Graham Legg Perthes Fund, c/o RajiWorld, 1810 Airole Way, Austin TX 78704.
I have a son who had legg perthes when he was about serven years old. I’ve never known of anyone else who had this malady. I had a choice of putting him in a body cast totally relieving the weight on the hip so that the hip could reform or wearing a built up shoe on his good leg and a brace on the other leg. I opted for the braceand built up shoe. When he walked he would swing the braced leg and hop with the other. He really learned to damn near run with the set up. His little friends called him Framkenstein. Anyway it took three and a half years for the hip to reform and he could get out of th brace. I’ll never forget what he said when the brace came off. “What am I going to do Dad? I dont have any shoes.” Needless to say, the first thing we did was go to a shoe store and purchase some shoes. He now is a grown man in his mid forties now .
Sincerely
vhwall@gmail.com
I was diagnosed with bilateral perthes (both hips)aged 8. My parents also had the choice of having me put in a heavey plaster body cast with my legs held wide apart or weight relieving braces. I had to have braces on both legs that continued below my feet to fasten to a round steel tube blocked with rubber to prevent slipping.These rubber blocked tubes were about 3 inches in diameter and were called walking pattens.On these I had to stand, balance and walk with both my feet suspended 6 inches above the pattens. The pattens were about 2 inches deep including the rubber blocks, so on standing I was at least 8 inches taller.Although in theary foot wear was not essential as on could not put ones feet on the ground my mum was advised to fit me with a pair ao strong leather lace up boots to prevent me toe poining which is a natural thing to do when ones feet are suspended in space. If toe pointing became a habbit it could easily cause a condition known as drop foot then this to would need braces to treat. I was put in boots that extended to the tops of my calfs and they were tight laced for added support. In addition I had a leather strap and buckle attached to the boot heels and then to the pattens so it was impossible for me to toe point. Standing for the first time in these braces was really weired, although I couldn’t feel my feet on te ground, every movement of the walking pattens on the ground I could feel as videration was transmitted up the side steels of the braces to the leather moulded thigh corset that fit tight in my groins and took my body weight. After a while I could do most things without crutches,balance, walk, get up steps etc. I was in the braces for two and a half years.
I began the first support group for perthes in the US back in 1999 after my son was treated for bilateral perthes. Since then we have helped over 2,000 families worldwide and are the largest support group in the world. If you have a child facing perthes and are looking for help, information, or simply encouragement, feel free to contact me at reidweaver@yahoo.com and I’ll be glad to put you in touch with our group. It’s kept private to protect the children involved. It’s been a real blessing to those involved.