Our road to treatment!!

First and foremost, I would like to thank you for clicking on this link and taking the time out of your day to read our story! I got sick in September of 2024, and things went downhill from there. I had been in and out of the clinic, emergency room, specialist offices, imaging, surgeries, you name it. Then, March of 2025 came around, and I was exhausted and still left with little to no answers. I had done a ton of research, combing through symptom checker websites looking for possibilities and looking them up. I was getting desperate and running out of energy. By mid March, I could hardly do the 4-hour shift at my management job without crashing the whole rest of the day or ending up in the ER needing fluids, pain meds, or something. At this point, I had already dropped out of school, gone from working 80 hours a week to less than 20. I chose to quit my job; I didn't know what else to do. If I wasn't working, I was in an appointment, or sleeping to have the energy to get up and work the next day. In July of 2025, I was scheduled to have my hip repaired. One of the small things they found while doing scans and looking for answers. So I was scheduled to have surgery on Aug. 8th. I was so nervous, but I could hardly walk or put weight on this leg from whatever was going oning on. Shortly after this was scheduled, we received a notice from our landlord of 5 years that they would be selling our home and leaving the rental company world. This was a shock to us, and was even more shocking that we were told we had 60 days to be completely off the property so they could make needed updates and sell the house. This forced us from a 3-bedroom with a large yard into a very small 2-bedroom apartment. We didn't have much saved up, as we were told the summer before this that they would not sell our house if they made this change. Thankfully, we found what we did and didn't need to be on the street. We moved, leaving many things behind as we had no room or way to move them on such short notice, and no help from the landlord with giving extended time once we found something. I switched all of our medical stuff over to a bigger hospital, and this is where the answers started to finally roll in. Even though my health had declined drastically. I had my hip surgery, and was attacked a week later at a social event at my parents', taking a lovely ambulance ride for my first time. This caused the healing of my hip to take much longer, but little to my surprise, this wouldn't be the only thing that contributed to that. After months of seeing specialists and testing, we finally got some answers. I found out I had Pelvic Floor Dysfunction, that my fracture in my spine was actually on both sides, and was getting worse. I developed a drop foot and neuropathy in my lower right leg, leading to the need for an AFO brace. I also had become a part-time wheelchair user by this point. I am on a liquid diet due to ineffective esophageal motility, gastroparesis, and other motility issues. I am not absorbing things correctly, so I am vitamin-deficient as well as being chronically dehydrated. I found out I have what they call the "Trifects." These include Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS). Now this is where the hard part comes in, as none of these have a cure. They are lifelong conditions that I will have to live with for the rest of my life. There are ways to manage them, and that is it. We started trying to find care providers and ways to manage my symptoms. After all the research we did and looking at what causes what. We noticed some of this stuff is genetic, so I had taken the girls to my PCP to get them a referral to be checked for my conditions to get them proper care right away, so they didn't get to the point I am. Unfortunately, both Kayliana and Hayden have Hypermobile Ehler-Danlos Syndrome as well. Now here is the hard part, and the part we are asking for help with. No care provider specializes in these conditions or can treat us locally. We would need to travel to them and also pay out of pocket to the ones we have found, as they are private pay and do not accept any insurance. We have no clue how much we will need, other than that it is $900 or more for each of us to have an initial evaluation at just one of the places that come highly recommended. I also lost my ability to drive, and we no longer have a vehicle, so we have been using transportation services and family for help. I am out of options other than to reach out to others and ask for help. We would be so grateful for any help we receive. Even if you can't financially contribute, please share our story; you never know who might be able to help. Thank you so much for taking the time to read to the end!