Help Alyda Get Life-Saving Treatment in Germany

Hi, my name is Janelle. I am setting up this gofundme for my beautiful 20 year old daughter, who is fighting several rare health conditions. This active full of energy

girl has dealt with a lot in the last few years- more than her fair share!

We have been to countless doctors. It's truly hard to know if this started

way back when she was in 6th grade and had her first concussion, & has unfortunately since then had several more concussions. But she amazingly fought through each of those, completed high school, and started college, but in the past 3 and a 1/2 years symptom, after symptom, has shown up.

Although she's had periods of managing, & living a pretty good life, right now she's in the thick of it. We feel beyond grateful for all the specialists we have been led to and know that this journey would have been longer and that much more frustrating if not for these resources. We are asking for help at this time because of a technology in Germany that will let her know with certainty whether she has compression issues leading to these unending, debilitating symptoms.

Here’s a little bit of alyda’s story in her own words: “Hi my name is alyda. I’ve been battling hyper mobile Ehlers Danlos syndrome, Postural Orthostatic Tachycardia syndrome, Mast Cell Activation Syndrome, and Gastroparesis. This year has been especially hard on my family and I. I was diagnosed with POTS about 3 years ago and learned how to manage it quite well. I was living a functional life up until about the first of this year when I left for the Netherlands to serve an LDS mission. I was sent home almost immediately because of my health. My condition had started to worsen rapidly. As soon as I got home I was diagnosed with hEDS, and the other diagnosis followed. I’ve declined pretty rapidly in the last 8 months, but have gotten significantly more sick in the past 4. I got a major knee surgery back in April. I was developing arthritis in my left knee due to so many dislocations. This is a very common result of hEDS. Since that surgery I have declined significantly. My knee healed well, but the rest of my body has started to fail me. In May I started having major gut issues. I started throwing up almost everything I tried to eat. My stomach had almost completely shut down. I had a PICC line placed for fluids, and a NJ tube place for nutrition. Since May, I have lost almost 40lbs. This put me in the ICU in Idaho for 4 days the first of July. My body had become so malnourished, so rapidly, that I collapsed. I was found by a friend, seizing, and gasping for air. My lungs were shutting down due to malnutrition. Luckily, an ambulance was called right away and they saved my life. I was intubated almost immediately, and was out for 2 days. I’ve been to 1,000 different doctors this year. I’ve been at appointments 3-4 days a week since January. I’ve done almost every testing imaginable. Ehlers Danlos syndrome is very under-researched. There aren’t very many doctors who attempt to treat the effects, as the disease itself is untreatable. I am trying to go to school for medicine so I am able to help people like me, but that is only possible if I get to a more stable place.

My family and I have recently learned of testing in Germany that is a lot more extensive than what we have here in the US. Unfortunately, as you can imagine, treatment outside of the country is not covered by insurance, and due to all I’ve been through this year, my family does not have the money to make that trip.”

After all she's fought for and been through, the amazing outlook she has on the forever changed quality of life she will lead going forward, we feel like this step (to Germany) is a little bit out of reach but necessary to get the answers she needs. So whatever big or small u can contribute would be amazing and forever appreciated! Thank u!