Recovery for Ryatt

Ryatt is an amazing 12 year old boy who is facing some very difficult times. In March of 2020, 5 days before the shutdown, he was diagnosed with a rare bone disease, Legg Calve Perthes Disease, better known as Perthes Disease. There is no known cause of this disease. A simple explanation is that the blood flow in the hip joint gets cut off and the ball of the femur begins to die and collapse. It’s rare as it is but his case is a bit more rare. 2 years after the initial diagnosis he started feeling pain in his left hip. He had been diagnosed on the right. I took him in for X-rays and it was confirmed that it was now bilateral. Both hips are now involved. He is a very athletic and funny kid! He has dreams of playing football and racing off road. His dreams are on hold until he has his needed surgeries and has recovered. There are no specialists in Las Vegas. He does have a pediatric orthopedic surgeon who is acting as a middle man here in town. For 4 years Drs have wanted to take the wait and see approach. I’ve taken him to Stanford Children’s Hospital in the past but I’ve always felt that not enough was being done. Then his Dr had twins and took at least a year off. Her replacement didn’t seem to understand the disease well. There is a Dr in Baltimore named Dr Standard. He is known worldwide for his work with Perthes children. I first spoke to him in June of 2021. Ryatt was not yet bilateral. He is the Dr I’ve wanted to get Ryatt to from the beginning. He said that Ryatt was ready for surgery and wanted him in office as soon as possible. Baltimore is so far away. I also spoke with his nurse and she informed me that we have to stay in Baltimore for at least 3-4 weeks post surgery for the Dr to see him regularly and for physical therapy. I couldn’t figure out how I could afford all of that. Living expenses at home, hotel, car, flights, food etc.. And then the medical bills. I searched for options closer to home. More on Dr Standard and my guilt in a minute. In May of 2024 the middleman Dr told us nothing could be done for at least a year or two. The next day his office called to tell me that an ortho from UCLA would be in office in two weeks and they felt Ryatt should see him. I did some research and found out he is an orthopedic oncologist. Not the type of specialist Ryatt needs. But we went anyway and during the appointment that Dr said he does conferences with 13 other Drs to go over X-rays, MRI’s and each comes up with a treatment plan and they discuss the options. He asked if he could present Ryatt’s case. Of course we took the opportunity, excited to get the opinions of so many Drs at once. But that turned out to be devastating. They all said “he is inoperable” and his only option is a total hip replacement! He was turning 12 that week! A total hip replacement on a 12 year old is way too invasive! So I again turned to Dr Standard in Baltimore. I was able to get his X-rays to him and talk to him about options. He told me he does see less invasive surgery options. I’ll use his exact words.. “His case is very complex but there are treatment options - the right hip is in a salvage mode at this point. The right hip represents a typical outcome of no treatment on a late onset Perthes - the exact treatment would depend on detailed exam and xrays - the left hip is at very high risk to go down the same path as the right hip - the right hip needs urgent aggressive treatment from the provided xrays” Option for his right hip.. “the hip can be distracted to improve position and motion - if the hip has stiffened to a point of being “fused” in a poor position, then performing a bone cut below the hip to put the leg in a better position can be considered - a total hip can be performed but you would want to hold off until he is finished growing” He also mentioned that boys typically stop growing from their legs around 15 or 16 and after that they grow from the spine. For Ryatt’s left, he suggests a hip distraction as well but with injection. Here is what he said in his is words but he had said ”hip distraction” in a short answer and when I asked about core decompression he wrote this. “ the core decompression and bone stem cell injection would be an option for the left hip - the right hip is past that stage of benefit” He will most likely need a total him replacement in his 20’s or 30’s once he’s done growing. Since we found out that it is bilateral and causing so much pain, I have felt helpless. I’ve blamed myself for not pushing for more aggressive treatment. I feel so guilty for listening to the wrong Drs for so long. I know I have to shake off the blame and guilt and just move forward but while living it, it’s pretty impossible. In my mind I constantly hear “if only I had found a way to Baltimore 3 years ago, would things have gotten so bad?” I even dream about that. Unfortunately, I have had my own health issues and we’re barely scraping by. I am turning to this in hopes of raising the money for travel expenses, equipment needed after surgery and his medical bills. With my financial situation, I don’t have the money necessary to get him the care he needs. I am willing to answer any questions anyone may have about his disease and post updates along the way. To follow his journey you can go to RyattsPerthes on Instagram. I try to do updates whether they are good or bad there, as it happens. Thank you!