Fund Rachel Shaver's Journey to Diagnosis and Recovery

Hi! My name is Mary Shaver and I am making a GoFundMe on behalf of my twin sister, Rachel, who is currently dealing with an undaignosed illness.

In February 2023, Rachel began experiencing full body, Parkinson's-like tremors. They are inconvenient at their best, and debilitating at their worst. She has trouble driving, doing her school work, etc. Her MRIs show a deterorarion of her basal ganglia and upon blood testing, her manganese levels are very elevated, 49.9 at their worst (normal range 4-15).

After fighting for a year, she was able to get a single iron injection which did bring down her manganese and improve her tremors. However, after a few months the manganese was back and the tremors returned. The iron infusion was a one time treatement option according to her doctors. So, now, we are out of options.

Rachel has seen almost every specialist possible. However, there are a few that were recommended to us (geneticist, rhumetologist, etc etc) that we are hoping to try. However, all of her current specialists have claimed that treating this is "out of their scope". While we've pushed for chelation, there have been no doctors who are willing to do it because of the risk, especially with the fact that we have yet to pinpoint a cause.

Her manganese is not caused by anything environmental. No water or other exposure. It's also not caused by medication or liver funtion. At this point, it seems it might be genetic.

I'm asking for assitance to help her with getting the help she needs. When applying to the Mayo Clinic, they quoted her 6k up front. While she's willing to have some medical debt, paying up front is not possible for is. While we're exploring other options (Cleveland Clinic, Undiagnosed Diseases Network) these endeavors will still cost both of us. She works a full time job (when she can) and I am in college for my Masters. Taking time off work and traveling will be expensive, so I'm seeking assistance.

Currently, the $5,000 would hopefully cover any fees or travel costs of getting somewhere where we can get her the she needs and deserves. No one deserves to have this kind of experience in their twenties and we just want her to live as normal of a life as she can instead of fighting for treatment!

This GoFundMe was created after the following TikTok and the response.

https://www.tiktok.com/t/ZTNj9GuJ2/

Thank you in advance for all the help and suggestions!

I am more than happy to update this page with additional information as well as spending plans and receipts of all out spending toward her health. Thank you all so so much.