I have been genetically diagnosed with a rare disease called Ehlers Danlos Syndrome. This is a connective tissue disorder and there is no cure or actual treatment. My joints constantly pop out of place and I have to wear braces or tape my body to keep them in place. The connective tissue in my organs and blood vessels breakdown and cause weakness. I also have a syrinx in my spinal chord the full length of my thoracic spine that causes my scoliosis. I also have a problem with my immune system called Mast Cell Activation Syndrome (MCAS). My body is always having an allergic reaction, so I break out in hives, rashes, get eczema patches all over, and take tons of medication to avoid an anaphylactic shock reaction. The EDS also causes problems with my heart where my heart rate and blood pressure jump and fall all the time to the point that I faint and have horrible migraines and dizziness. I also have a leak in my aorta that we will constantly monitor. The leak in my aorta was the breaking point that I felt that I needed to help other kids dealing with invisible disorders. Many times people with EDS, MCAS, POTS, EOE, Syringomyelia, and Scoliosis go unheard or overlooked. I want to bring attention to these disorders and make sure that kids that struggle with these disorders or other invisible disorders are not in it alone. I will work hard on educating people of these disorders and I am currently participating in clinics related to these disorders to help find answers and maybe one day a cure. I started this non-profit organization to help kids cope with stressful and scary disorders. My first project will be to donate zebras to kids diagnosed with EDS or other connective tissue disorders. I have also created support groups for these children and their parents. I do not want anyone to feel the way I did going through the diagnosis process. As the charity grows I hope to help with wheel chairs or other medical equipment they may need. When I have helped the EDS community I will move on to care packages for pediatric infusion patients and others dealing with difficult diseases. Please follow my page and if you want to be a part of the organization join our charity group. Thank you so much for supporting my cause! Many hugs and much love to you all!
