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Floating on Clouds

I wish I could explain just how excited I am about the approval for SDR. Almost three years ago my husband and I were getting married and I was working on my bachelors in business and he told me he was not happy with business and wanted to go into nursing. Nursing was my first passion, long before I even dreamed of this wonderful man that I call my husband and with that thought we jumped into a journey even I could not predict the ending of. During the first year of nursing school I learned some valuable tools and I had more time to research in my spare moments to find out everything I could about Annie's hereditary spastic paraplegia. It did not take me long to stumble upon the Facebook group for HSP and not long after one of the members shared with me some success that has been found with children with HSP getting SDR.

I immediately joined the Selective Dorsal Rhizotomy- St. Louis page on Facebook and began my silent vigil. I waited and watched as each family with spastic diplegic CP came and shared their before and after SDR videos and I wondered if Annie would qualify. I called and was told that they have performed the operation on select patients with HSP in the past but that Dr. Park would have to evaluate her first. St. Louis sent me the paperwork, it was ALOT of things they wanted, I figured I would wait and watch the success stories a bit longer, do more research and make sure I had good insurance for Annie, of course why not healthcare, isnt it the best place to get good coverage? well, I thought so too but after 6 months and loads of medical bills later I realized that insurance is just not what anyone hoped for. We graduated from nursing school and I finished gathering the paperwork- specific MRI views- thankfully we already had these since she cannot undergo another one while the pump is placed, specific X-rays, a special physical therapy evaluation, and her growth and developmental history. I pulled all this paperwork together and was about to have her physical therapist complete the evaluation at the beginning of this year when COVID struck and all their offices closed for months. I waited patiently, wondering if Annie would get her chance, continuing to watch all these kids success. Finally, we completed the paperwork and I mailed it!

Fast forward a few weeks and today, yes TODAY we received our YES, a day that I will never forget, hopefully soon we can have her miracle surgery, hopefully soon she can walk with ease and not fall down all the time. Hopefully soon I can buy her that first pair of flip flops she so desperately wants.........

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