Donate to Ease Shannon's Pain and Struggles

Shannon’s service dog, Harley, passed away a year ago from cancer. Harley helped Shannon live a more independent life, and was worth her weight in gold. Shannon has a rare genetic condition/disorder that is getting worse really fast. We have never met anyone that has the same condition as Shannon that is as young as her (she is only 21 years old) and has issues as severe as she does. Shannon did have a genetic test done that found there were two variants in her TNXB gene. The TNXB gene has to do with the musculoskeletal (tendons, ligaments, nerves, discs, blood vessels, and muscles), cardiac, and dermal tissues and plays a critical role in regulating collagen. Mutations in this gene are typically inherited in an autosomal recessive fashion in association with Ehlers-Danlo Syndrome.

*Updates will be posted at the bottom.

We have been told that there is no cure and the only things that can be done are pain management and surgery. Shannon has already had surgery on both of her feet. Shannon has worked two jobs for the last three years and she has had to be sent home from work (both jobs) because she physically cannot work.

This last year she has developed hemiplegic migraines. When she has one, it makes Shannon look like she is having a stroke and her jaw dislocates, she completely loses sight in her left eye and loses some sight in her right eye. Normally Shannon would be able to pop her jaw back into place when the migraine has finished, but it’s getting worse, and she has started to have to go to the ER to get help to put her jaw back in place. This has led to more time off work due to having her head bandaged to keep her jaw from dislocating as far as it normally does, and a liquid diet. She is set to see a *surgeon* next week. Shannon had nerve ablation in her neck last month to try and provide some relief from the migraines, but it did NOT work. The migraines will last anywhere from 1 – 4+ hours and happen 1-3 times a day. It was becoming very dangerous for her to be on the roads to drive to work, so she moved to SLC to live 5 minutes from her job. Shannon is a vocal teacher. She has had to stop teaching the children classes because they can’t understand her when these migraines happen. She has had a lot of gracious teenage and adult students, and she will still teach a lesson with a dislocated jaw when she can, but she has missed a ton of work because she physically could not do it. Shannon loves her students and her job, and this has been absolutely devastating for her. Music is her life (see videos).

In the last year, Shannon’s hips have also started sublexing (partial and full dislocations). Shannon has had to start using a cane to walk more. Shannon can’t walk 1/2 mile without her hips sublexing. Occasionally she has to use a wheelchair (that someone else has to push) when her hip(s) (occasionally it’s both at the same time) sublex. Shannon’s ribs will sublex while she sleeps, and her ability to play instruments has been drastically reduced (even when wearing compression gloves), Shannon’s fingers have frequently dislocated while playing acoustic guitar.

Shannon also has POTS (Postural orthostatic tachycardia syndrome - her blood pools in her feet and her heart works extra hard to try and recirculate it to her head, but her brain doesn’t get enough oxygen and down she goes. She’s working with her cardiologist and is on medication which has been an improvement, but it still affects her life) and she has osteoarthritis in her neck and hands. Shannon is in pain more than you can imagine. It has also affected her mental health. It is a catch-22 situation. Shannon attempted to get help a couple of weeks ago and she could not be accepted as a patient for treatment because she can’t walk on her own and she couldn’t have a cane or her braces at the center.

We are trying to raise funds for the following:

• A task trained mobility service dog – insurance does not cover service dogs at all and the training alone for a mobility service dog runs between $15,000.00 - $30,000.00.

• Associated vet bills, dog food, and equipment for the service dog.

• Medications and mobility devices that are not covered by insurance.

• Co-pays for doctor visits, surgeries, and/or other medical procedures.

• Rent, and any possible associated taxes or fees with raising these funds.

Realistically, we know that we are unlikely to meet our goal to help Shannon, but we are grateful to anyone that could donate and share this.

*Update - 2/24/25 It turns out that the ER didn’t refer Shannon to a surgeon, they referred her to a TMJ specialist to evaluate her for surgery and now we are waiting to hear from the surgeon. The TMJ specialist was very concerned about Shannon’s quality of life because her condition has been very isolating and hard for her to go out to even see friends. He also said that her job is making her jaw worse.

3/5/25 - The earliest appointment Shannon can get to see the surgeon is April 8th. It’s better than the eight months it took to see the neurologist. Fingers crossed surgery gets scheduled soon after.