Jyl Ray Ehlers Danlos Syndrome Surgery Funding

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After 27 years of misdiagnoses Jyl was finally correctly diagnosed with Hypermobile Ehlers Danlos Syndrome. Shortly after receiving this diagnosis, Children’s Mercy confirmed that 2 of her 3 kids also have it. Ehlers Danlos is a connective tissue disorder that affects every tissue in the body. For Jyl, it has caused significant problems with every organ system, neurological function, and severe chronic pain. It’s a syndrome that very few doctors know anything about. After doing extensive research, a neurosurgeon with expertise in EDS was located in New York. Jyl will be traveling to New York the first week of June to have surgery to release the lower portion of her spinal cord that is stuck to surrounding tissues in hopes that it will help restore some of the function that’s been lost. This surgery and trip will be very expensive but if it can ease some pain and allow Jyl to live life with her family again rather than just existing it will be well worth it! Asking for help is not something we typically do, but with medical bills already piling up and knowing Jyl will not be able to work for at least 4-6 weeks after surgery any little bit donated would be greatly appreciated!