I’m Donna and my 21 year old daughter is Kendall. I’m so proud to call her my daughter. She has fought through the unfathomable, never giving up and always keeping a positive attitude. I also have a 29 year old son, Ryan and 13 year old daughter, Karly. One of the hardest parts of our EDS journey is leaving my husband and children home in Texas while Kendall and I travel all over the US for medical care.
Nine years ago Kendall was diagnosed with a neuropathic pain condition, Complex Regional Pain Syndrome. Her diagnosis didn’t explain many of her symptoms so the next year we were still searching for answers. It was devastating to have no one to turn to for answers. It was also overwhelming to know that not one of the 50 doctors she saw that year had a clue how to help her. Most of those doctors didn’t even believe anything was wrong with her. They told us it was all in her head. Eventually Kendall was diagnosed with Ehlers Danlos Syndrome. Getting the EDS diagnosis tied many symptoms together, but it still left us with a network of doctors who didn’t know what to do. Many doctors never learned about EDS, some never even heard of it. Since then she has been diagnosed with many other accompanying conditions including Dysautonomia, Chiari, Tethered Cord Syndrome, Intracranial Hypertension, Mitochondrial Dysfunction and Temporal Lobe Epilepsy. Kendall has had over twenty surgeries and lived through an abdominal aneurysm that should have taken her life. Our amazing God miraculously kept her alive and gave her a strong will to survive. She now has multiple spinal fusions, three stents in her brain, one shunt in her brain, and one shunt in her spine.
The beginning of this journey was isolating and lonely. It was usually just Kendall and I traveling all over the country for treatment while the rest of our family was home trying to keep up with work and school...with life. We spent many months in hospitals far from home. However, because of all this, Kendall and I made the most incredible, wonderful friendships along the way. We met our EDS family in waiting rooms, elevators, doctors offices, and even on an airplane. This family of fellow warriors is what keeps us going. This extended family knows us. Gets us. Loves us. We have made lifetime bonds and created extended support systems. I can have a team of moms praying for Kendall at any given moment! Medicine can’t provide what these bonds can. My favorite thing to witness is Kendall reuniting with fellow EDS warriors. It is the best feeling in the word to watch her connect with some of the few people in the world who can truly relate to her life. Despite how very ill and fragile these girls are, there is always laughter when they are together. This is priceless. I am so grateful to be part of this network of moms and daughters who formed deep relationships in hospitals, hotels, and Ronald McDonald Houses! Nothing compares.
Over the years we have all talked about how great it would be to spend time with each other when a surgery wasn’t involved and now it is happening! We are so grateful that someone we have never even met chose us to be included in this retreat. This is truly a dream come true. Kendall and I are both very honored to be invited. We are blessed to be joining old friends and meeting new friends; extending our EDS family a little further!
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