The treatment needed will cost $5,000 for each week of intensive therapy. She will begin the treatment with 3 weeks of therapy ($15,000) and then 1 week every 3 months for the next 4-5 years. As part of her therapy she will need a traction chair which cost $7,000, an aggressive full torso brace (during the 3-5 years of treatments she will need 4-7 different ones as she grows) each one costs $6,500, spinal weighting equipment which is around $500, and supplements that she will need to take daily to help with her pain and the nutrition for her body to grow correctly with this disease will cost around $300 a month. We are looking at needing 35,000 to just begin the program.
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In November of 2016 we noticed Kyrahs spine didn’t look right and that there was a curve in it. We realized she must have scoliosis. We took her to her doctor who did an in office exam and advised us that she did have scoliosis but it was less than 10*. We were told to bring her back in 6 months for a follow up. Fast forward to April of this year and we are back at the doctors office. Once again we were informed that “her curve was small and to just keep an eye on her as it was still less than 10*”. We kept talking to her doctor about the Scoliosis and that in November she had started complaining of having pain in her legs and lower back along with a feeling of weakness in her legs. She was also having issues with bowel movements, no matter how much water or fiber she was taking into her diet daily she would sometimes go a week without one. The Doctor finally agreed to order an x-ray just to check and have a record of her curve. Well her x-ray showed that her curve was not under 10*, in fact her curve was already at 28* on the top and around 12* on the bottom. We also found out that her spine doesn't just have a S shape to it but that her spine is also twisting. Not only that but the x-ray showed she was severly constipated and needed to be put on a liquid diet for a full 24 hrs along with needing to take Miralax for a while. We were immediately referred to a spine specialist for pediatric orthopedics and advised she would be fitted for a back brace. In Late June of this year Kyrah received her 1st back brace (a Boston Brace) and was advised she would need to wear it for 16-20 hours everyday. We also learned she would need to do this until her skeleton was considered mature and she was done growing. She made us so proud with how strong she was with all of this and how well she did with wearing her brace as advised. But in November of this year we found out that her brace was not helping her. In fact her curves got 10* worse on both the top and bottom. She was now at 38* on top and 24* on bottom. The doctor she sees for her brace decided we needed to get a new brace made. However both he and her spine specialist don't know if it will work. Their plan of action for my daughter is to wait and see if it helps. If not they will wait until her curve gets bad enough to do surgery. They feel that if the brace prevents the curve from getting worse it is a success. Well the wait and see approach is NOT ok for us. And in fact it is proving not to work as her curves are progressing. We went looking for other treatments. We found a care center located down in Campbell, Ca that treats patients with scoliosis and they are having great results with not only preventing curves from getting worse but with getting the curve straighter and at lower degree. How can we not give this a chance? The catch is that medical insurance companies don’t want to pay for anything more for scoliosis patients then a brace and future surgeries. Yes surgeries because it seems to never be just one surgery but a number of them as they age. So we will have to pay for the medical treatment for Kyrah out of pocket which will get expensive but to prevent surgery it will be worth every penny. We are hoping to start this intensive thereapy program in January of 2018, so only a month away. But to get start it is going to cost us $30,000 for the first 3 weeks of treatment and personal medical equipment, not including the cost of a hotel room or food during those 3 weeks. She will be in therapy M-F from 8am until 4pm. Once the 3 weeks are over she will come home with the neccessary equipment and 6 days a week she will do between 2-3 hours of therapy at home. After being home for 3 months we will travel back down to the Care Center for another week of intense therapy, this will cost us another $5,000, plus food and a hotel room. Then every 3 months for the next 4-5 years we will go down for a week of therapy, each time it will cost another $5,000 for the therapy. (by the time we finish the program we will cost us somewhere between $150,000 to 200,000). She will continue this therapy treatment until her body has reached full growth maturity. They measure this growth on a Riser scale of 0-5. Right now Kyrah isnt even rated a 1, so we have a long way to go and she has a lot of growing still to do. And because she has a lot of growth left that also means if we dont get this treatment as soon as possible Kyrahs curves will get worse. As the curves get worse so do the twists and that will start to impact her lungs and her heart. Because of this we have also choosen to Homeschool Kyrah for the rest of 7th grade and longer as we get used to a new part of our daily lives. We will be learning how to manage the treatment and hopefully not let our other 2 children feel too huge of an impact. Thank you for any help you are able to give us and please share her GoFundMe with everyone you know.
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