Receiving Abundance - SDR FUNDING from TELEMIRACLE
In 2021, Presley was diagnosed with SPASTIC DIPLEGIA CEREBRAL PALSY. Approximately, a year later, we heard about SDR and decided to look into it. It is not done many places in Canada so I knew this would be a out of province surgery. Cerebral Palsy is brain damage which means there is no cure. There is management and support. Some of those are physical therapy, botox, orthodic devices, heel cord surgery, etc... depending on the level and type of diagnosis.
In 2022, our Orthopedic Surgeon suggested we go for a consult just to see what they thought for SDR (Selective Dorsal Rhizotomy). Because she her CP 'type' is Spastic Diplegia which affects the lower half of her body and her level is 1-2 which means she is very functional. Because Presley is a "great therapy kid", she is a great candidate with the type, level of CP + her mentality and attitude with therapy. Essentially, the surgeon cuts the skin over the lower part of the spinal cord. The surgeon then finds and cuts the nerves in the cord that are causing spasticity ( muscle tightness) in the legs. This is a pernament surgery because those nerves cannot grow back. The post OP is lots of physical therapy and possibly casting, different splints, etc... all depending. The patients brain needs to be 're-wired' to utilize their muscles because they can no longer rely on that spasticity.
I met a lady in Saskatchewan who had had this surgery around her 4th birthday as well, and her and her mom said that it changed her life with pain management and her mobility. I chose to talk to my orthopedic surgeon here in Saskatoon and she recommended that I go for a consult in Vancouver, BC as Saskatchewan does not offer the surgery. About 6 months ago, I recieved a call to book the consult for April 2023.
I am heading to Vancouver today (April 3rd) with my mom and daughter to Vancouver to go for the consult and to learn more about the possibility of recieving this surgery. If she is a great candidate and if I choose to move forward with the surgery, it will happen within 6 months. This week I will learn what the logistics of recovery will be, if I need to be in Vancouver or if it can be done here, etc. Recently I was informed that our out of province expenses for the consult and moving forward, the possible surgery will be supported by Telemiracle. They called me to tell me that she would qualify for financial supports and I broke down into tears of gratitude. Telemiracle gives families the opportunity to explore supporting their children in ways that are sometimes unattainable because of financial situations.
I am so so grateful for the financial support I will recieve for my daughter to have the opportunity to possibly have a surgery that will change her life. I would never wish her disability away and if I am being honest, I struggle with feeling guilt and like maybe I could have prevented this for her. I feel shame that I got pregnant unplanned and that she has to go through life with a single mom and also experience life in a disabled body. My daughter does not know any different, she only knows her body - but I wish I could take away some of her pain and some of the barriers I see her experiencing.
I can not wait to see BC Children's Hospital and learn more about the possiblity of Presley having this SDR surgery. I will then know more clearly what the surgery + recovery will look like. The opportunity to support Presley with pain management and energy would be lifechanging for her and I am so happy to have the chance to possibily improve my daughter's quality of life.
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