Get Lexie Moving & Grooving Again

$620 of $2,700 goal

Raised by 15 people in 9 months
A little About Me

Hello, my  name is Lexie, I am 22 years old and I have a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome. This has severely impacted my life and my entire body. The disorder pokes fun at me and does things like:

- Unstable joints ( all of them! even my toes and spine! )
- Gastroparesis; my stomach muscles don't function properly anymore, thus I'm striving to thrive on a beautiful feeding tube. (-: I have an upcoming surgery to place a permanent feeding tube.
- Pain. So. Much. Pain. Everywhere, in places I didn't even know existed or was possible. Joints, Muscles, Fascia, Organs, Teeth, Bones, even my veins hurt. 
- Mast Cell Activation Syndrome; My body releases histamine cells in response to random things that can change weekly, including things like foods, lights, sounds, scents, etc. So I am always having allergic  like reactions, and lots of surprises!
- And many, many more!

Here's Why I Am Asking For Your Help:

One joint that is especially giving me a lot of issues, is my jaw. It is incredibly unstable and shifts in and out constantly, every day, with tasks like resting, to eating, laughing or speaking. 

It causes me problems like:

- Subluxating; Jaw "sticks" when it slips out, causing a lot of pain
- Offset bite - (my teeth don't align when I close my mouth nor can I open my mouth wide enough to let anyone look inside it)
- Sleep Apnea- Subluxations in my sleep cause my airway to be constricted
- Constant headaches / Face pain / Teeth pain
- Sleep deprivation - brain fog, dizziness, and irritability come a-runnin'
- And much, much more!

Ehlers-Danlos Syndrome is very complex, under-researched and for me, a debilitating disorder. It requires understanding to properly treat without harm or at least, as little as possible. It is almost an impossible task to find medical professionals who have even heard of my condition, let alone are willing to try to understand and treat my complex symptoms. Surgeries and procedures are generally avoided in individuals with EDS unless absolutely necessary as we tend to not heal well or quickly.

Another Obstacle:

The State Insurance I rely on does not cover any dental work whatsoever. 

After years of high premiums and astrnomical deductibles and co-pays, I finally had to get on the State insurance to continue with my care. Today I am raising money to get myself to a Cranio-facial specialist that is knowledgeable on my condition and can help stabilize my jaw homeopathically before needing to resort to surgery. There are not many out there, but we found one 2 states away that is extremely well versed in Ehlers-Danlos Syndrome and even travels around the world to speak and educate others about it! How cool!

Here's What I Need To Do: 
We will be cramming 3 appointments into 2 days since we are driving 400 miles away for treatment. 

I will most likely need a Jaw Orthotic; a custom retainer that will fix my jaw alignment and bite, that I will wear 24/7. This is supposed to prevent my jaw from slipping out and causing so much pain and discomfort, and allow me to laugh, smile or eat without immediately wincing. 

Here's What I Need Your Help With:

- Bite Plate - an estimated $2200 (Includes 3 appointments, Consultation, X-rays, Custom orthotic fitting and casting, etc. )
- A place to sleep - $250 (For 2 nights)
- Food - $150 (For 3 days for myself and my family)
- Getting there and back - $100 

I was fortunate enough to get an appointment made with this specialist at the end of November. My medical bills that have accumulated over the past 7 years have completely tapped us out, and I am hoping we do not have to postpone this treatment any longer. Any of the leftover funds will be put towards medication and medical equipment insurance does not cover. 

My next big goal is to get me to Mayo or Cleveland Clinic as  it has been suggested by multiple specialists  in my area. But at this time, it is completely out of our league financially. Baby steps!

Thank you so much for being a part of my story.  Please feel free to reach out to me by e-mail if you have any questions. This is only a fraction of my story. (-:


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Alright long overdue update time.
I have been recovering from an abdominal feeding tube placement that took 3 days to place ( only meant to take 1 ), plus an extra day for monitoring. I've been very weak since being put under 3 days in a row, so I've been relying on my rollator quite a bit to get around, as well as physical and occupational therapists come twice a week. They are helping me make my home more accessible, build strength, endurance and balance, and are working on getting me a wheelchair and custom knee orthotics. Depending on the day now, I can get around pretty well without the walker!

As of right now, I still don't have a team of doctors. I am used to being told I'm too complex, I need to go to Mayo Clinic or see other major research center/ specialists (which we want so badly, but $$$ !!!), there's nothing left they can think to do, etc. We may feel like giving up, but we refuse. My progression is very behind in many areas of my health as most of our time is spent researching medical professionals that may have a clue about this mess, making sure orders are sent to the correct location, and driving everywhere hours away just to be turned away once we get there. I still do not have saline infusions going as we know I need, so my blood pressure is dangerously low, my bowel's don't move correctly, I can't stand for long or bend over without getting ill, my brain isn't functioning well, etc. - the list goes on and on. This is what dysautonomia looks like. We are even considering a central line because my veins constantly blow, hide, roll, and are riddled with scar tissue.

The day I got home from the hospital, I received some discouraging news- I was denied disability for the third time. We were really hoping that disability acceptance would open up more doors for us to seek specialist care that we cannot seek out currently due to insurance limitations and financial circumstances, but that's not what the universe has in store for me right now. We are pretty lost feeling at this time, but I know we will find our way.
I am still shooting for my $2,700 goal to see the specialist out of state and get a custom jaw orthotic made.
And as time goes on, needs build up and I am always learning new limitations. Every day I use a load of tapes, wound cleanser, wound and drain sponges, tubie pads, tubie clips and belts, and other feeding tube supplies- which is out of pocket, insurance will not cover these to our surprise. Here are a few other things that will make my life easier when we can afford them:
- Portable IV pole
- Modified feeding backpack, Adhesive remover,
- Clothing that fits my body now
- Bed rail, grabby stick
- Bed table
- Medication I rely on that Insurance will not cover

Thank you again for taking the time to read my story, for your generous donations and getting my story out there for others to be a part of. I couldn't do this without your support.
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$620 of $2,700 goal

Raised by 15 people in 9 months
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