https://youtu.be/owwu3xgjfXo Emily is an incredible 9 year old kid who loves adventures and being busy. She was born with Rett Syndrome, a rare and severe neurodevelopmental disease that makes it impossible for her to control her body. Emily has not let Rett Syndrome define her and those who are lucky enough to know Emily know that she is kind, funny and smart and so much fun to spend time with. Rett Syndrome is a cruel disease that has made life very difficult for Emily. For the past 18 months, Emily’s health has declined as Rett Syndrome has progressed. Her main struggle has been dystonia which for Emily presents as very painful muscle spasms, stiffness and twisting that take over her entire body. Emily has been hospitalized for dystonia and despite taking many medications and doing everything we can, Emily’s dystonia is now considered refractory (not managed by meds) and most days over the past year Emily has either been in severe pain or sedated from treating the dystonia attacks. With a focus on the best quality of life for Emily, the Neurosurgery team at Sick Kids Hospital believes the best and last option to provide relief to Emily is Deep Brain Stimulation surgery. This has been very difficult for us to imagine doing for such a young child. Even with a summer full of fun, Emily has been having daily dystonia attacks requiring rescue meds and we’ve realized that we need to try anything that could improve Emily’s quality of life. Recovery from this surgery is long and restrictive. Emily won’t be able to do any of her favourite activities - swimming, trampoline, and anything with any risk of her being hit in the head or chest. We are desperate to help keep Emily comfortable and happy during her recovery, which brings us to hoping to raise funds to have a home Trexo walking device which will keep her moving safely, provide excellent physical support for her scoliosis, bone health and so many more benefits. It would help her physical recovery and also her mental health. Emily has been able to have trexo sessions this summer at camp and she LOVES it. It provides the physical support to hold Emily in a proper walking position, giving her as much support as she needs. Having access to one daily at home would be incredible, during her surgery recovery and beyond. Emily used to be able to walk but over the last few years has lost that ability. She loves being upright and moving. Losing her ability to take any independent steps has been very difficult. She works incredibly hard at physiotherapy and says yes to any opportunity to be active – bike riding, trampolining, swimming, walking etc. but as Rett Syndrome progresses she has lost a lot of her motor function. Having a trexo to use regularly would be the greatest gift to Emily. To see Emily using the Trexo: https://youtube.com/shorts/aKUtANAHxj4?feature=share To learn more about the Trexo: (https://www.youtube.com/watch?v=WkaRcPCNhZw&t=18s) The cost of a Trexo is $40 000, or $1100 per month. Our portion of the Rifton Pacer is $5500 and the Trexo treadmill is $1100. We hope to raise enough to offset the cost to buy this amazing technology for home. Thank you for any donation you are able to make, and we appreciate you sharing this with anyone else who may be able to support Emily.
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