Devin’s Hope To Conquer Perthes

Our 13 year old son Devin was diagnosed with Legg-Calve-Perthes Disease (Perthes) in mid 2017. In almost an instant he went from being our boy who loved to be outside playing sports everyday to our child who could barely walk. Perthes is an extremely rare childhood disease. Surprisingly, there are very few doctors in the USA who are Perthes experts and none of them are in Colorado.
After researching Perthes and talking with numerous doctors in Colorado we tried to stay positive thinking, “Hey, we’ve got this. After surgery he will be back to his usual self and hopefully this will only be a blip in his life story.” But we were wrong, very wrong. Unfortunately we have now learned that Perthes is so much worse for some children than it looks at first diagnosis. Perthes is avascular necrosis of the femoral head which means the blood flow to the femoral head stops and the bone dies. Some kids with Perthes only lose a small percentage of their femoral head. Unfortunately, this is not the case for Devin. He has no femoral head left. Because of this, his femur is slipping outside of the joint which is causing his bones to rub together and not only continue to wear away his femur but also his pelvis. Devin has already had one surgery here in Denver but unfortunately it was unsuccessful. He has developed a hinged hip and it has made Devin’s pain worse and he now walks with a severe limp caused by a three inch leg length discrepancy and he cannot stand up straight while he is walking. A hinged hip is one of the worst possible side effects you can get with Perthes. Devin’s current situation is not only causing permanent damage to his hip but also causing more issues throughout his body than we could have ever imagined. Our son is living one of the worst possible Perthes scenarios.

Devin needs help now. He wants to grow-up like a normal kid, doing the things all kids deserve: to happily run outside, to jump on the trampoline with his brothers, to comfortably sit in a chair during school. He is a boy who just wants to be normal but his body isn’t letting him. As his parents we are doing everything we can to fight for him and to fill him with hope. We have reached out to Perthes experts all around the world and they all agree the available options here in Denver are not a solution to Devin’s very serious problem. However there is light at the end of the tunnel because there are successful treatments available to our son out there but at an extremely high cost. Because we have exhausted all treatment options here, we are forced to make the difficult decision to either stop treatments, knowing he will be handicapped and in pain for the rest of his life or go outside of Colorado and possibly outside of the United States for the necessary medical care. Our insurance will not cover the costs of additional treatments and this is the reality we are living in right now. In order to get Devin the care he desperately needs we now need your help.

This is our plea to our family and friends. Devin will need to see doctors that are out of our insurance network, out of our state and possibly even out of our country. For example, one of the only possible treatments available is a custom ceramic hip replacement. This would cost us $50,000 and require us to travel to Europe because custom prosthesis are not FDA approved in the United States. We are humbly asking you, to donate anything you can. For our son to have a chance at a life without pain or permanent disability we are hoping to raise enough to assist in covering the costs associated with the next rounds of surgeries. Please consider making a donation to support Devin and our fight for him. With your contribution he will have a chance at beating Perthes. For each amount given, we can not put into words how much we appreciate your gift to our son. From the bottom of our hearts, we thank you – Dave and Heather