Hi, my name is Mackenzie and I am fundraising for my son, Jaiden Ward. Jaiden has been on a very long journey most of his life. He has now had eight broken legs, the first one when he was barely a year old. Jaiden is five years old and most summers he has spent with his leg in a cast. He has had one surgery already where his surgeon felt she was leaning on the extreme side with how she performed but we wanted to be sure his leg would be fixed. Unfortunately even with a bone graph from his hip, a very large metal plate in his leg, and clearing out all the dead bone, his poor leg still broke again. As parents, you can imagine how horrible this is to continuously see your child in pain as well as missing out on so much. The good news we had after this last break is we finally were given some solid answers. Jaiden was diagnosed with Congenital Pseudarthrosis of the Tibia. Congenital pseudarthrosis of the tibia is a very rare condition, occurring in only 1 out of 250,000 births. Breaking it down-the tibia is the inner bone of the two bones that make up the lower leg and connect the ankle to the knee. And pseudoarthrosis is a bone fracture that fails to heal properly on its own. When this pseudoarthrosis of the tibia is present at birth, it is known as congenital pseudarthrosis of the tibia and can cause a variety of other complications over time. While we are so relieved to finally have answers, dealing with this diagnosis has first been difficult emotionally as well as looking at how to deal with it leading forward. Jaiden's surgeon we are currently with is amazing but does not specialize in this disease, they can proceed with yet another surgery but the success rates are not very high and we have already discussed his third surgery options if this next surgery was to not hold a union. We had two options of surgeons specializing in this disease with high success rates who we would feel confident operating on our son. The first surgeon we looked into we had high hopes for after consulting with him over a zoom meeting, reading his published papers on this disease, and reading many testimonials from patients. Unfortunately after spending so much time fighting for our insurance to pay for the surgery through them, then applying for a new insurance only to be denied with that one also, and going back and fourth between our insurance and the private practice hoping to come to an agreement we are now moving forward with our second option of specialist. (Paying out of pocket for a surgery like this is just not an option for MOST people) We still feel very confident with this decision, we are just discouraged with the time that was spent on a surgeon we are no longer going with, pushing Jaiden's much needed surgery back even more now. At this point we are desperate to get Jaiden in to the Rubin Institute- International Center for Limb Lengthening. Jaiden's surgeon highly recommends this route for Jaiden and has explained the need to get him there as soon as possible. Congenital pseudarthrosis of the tibia remains one of the most challenging and misunderstood conditions in orthopedics. The difficulty of treatment lies in the weak healing power at the fracture site, a tendency to refracture after treatment and the difficulty of stabilizing small osteoporotic bone fragments in small children. Even in cases where a union has been achieved, there is difficulty in maintaining it. Frequently, the end result is a frustrated child and family who have been through multiple failed surgeries and remain with a limb that is short, deformed, and almost functionless. For this reason, many orthopedic surgeons recommend amputation, particularly after a third failed surgery. We are determined to take our baby to the surgeon who can fix him and make this the LAST surgery he needs to go through. Unfortunately, that does mean flying to Baltimore and possibly staying there for three months for recovery and therapy until he is cleared to fly home. The good news is they do work with doctors nationwide so prep before and after surgery can be done with his current surgeon and they will be working together on Jaiden's case through the entire process that way we are not having to fly back and forth. The hard news is even after insurance the hospital bills as well as hotel, food, flites, etc are going to be pricey. We are reaching out for help, which is not easy for us. But this is when you put your pride aside because our child and the care he NEEDS is who matters right now. I know this was such a long story to read but it is hard to leave too much out when it has been such a long journey for him. If there is absolutely anything you can help with our family would greatly appreciate it. Everything we receive is going to Jaiden's surgery as well as recovery. If you can't help financialy please send any prayers his way or good thoughts. He is such a strong happy boy and we just so desperately want him to live the life I know he deserves. Thank you, friends!
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