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Riley's Road to beat Perthes Disease

来自 ARMER FOUNDATION FOR KIDS

Riley is a 11 year old super happy energetic girl. Her favorite thing is to play soccer, she is the goal keeper for her Club Soccer Team. Around Thanksgiving, Riley started to limp, her mom thought she had pulled a muscle at soccer practice. With it being Thanksgiving, they had a two week break from playing. Her limping came and went and she wasn't complaining much. After the break, she went back to soccer practice on a Monday night and started limping very badly. Next day she was crying in pain. Mom took her to urgent care, they did x-rays and told her that she fractured her femur and to go to an orthopedic surgeon and sent us home. That night she was screaming in pain so mom took her to Phoenix Children's Hospital. After 8 hours, the ER Dr came in and asked her to sit down (I knew that wasn't good). She asked her if Riley had a bone disease and my reply was I don't know does she? She explained that Riley had Osteonecrosis of the Femoral Head. With the help of amazing friends we got Riley into the Orthopedic surgeon the next day. He set Riley up for an MRI and after her MRI she was diagnosed with Perthes Disease. Perthes is a rare childhood disease where the blood flow to the femoral head stops for no reason and the bones start to die. We then learned that Riley had two strikes against her, her age (9 is old to have this disease) and her sex (girls have a less chance of healing than boys). In January she had a Core decompression with bone marrow aspiration. Her doctor gave that a 30% chance of working. Since then Riley has been on a roller coaster. Some days she is fine and others she is in pain. After a lot of research, they found a specialist in Baltimore, they sent him Riley's records and he said if we continue the path we are on and don't do anything else she has less than a 10% or recovery. He has recommended a Hip distraction with an External Flexor. They will fly to Baltimore where she will have the surgery and then stay for extensive physical therapy for 3 weeks. They will then fly home. The external flexor will stay on for 4 months. At that time, they will fly back to Baltimore to have another surgery to remove it. This surgery is very aggressive and extremely intense but gives Riley best hope at a good outcome. She will have extreme pain and this journey will be VERY hard but I know Riley will give it all she has!

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