Hello friends,

I have put this off for as long as possible but circumstances are now forcing me to share. Back in August I began having a bunch of strange neurological issues and then at a routine eye exam we discovered my right eye was sinking in a little.

Over the course of the following months my eye continued to sink in further and my cheek on the right began thinning too. I continued to develop more neurological symptoms and pain. I went to countless doctors who had no idea what was going on. I ended up in Minnesota all of November and most of December seeing doctors at the Mayo Clinic. During this time my right leg from my hip to my toes also began to become painful and started wasting too.

I was finally diagnosed with a disease called Parry Romberg Syndrome. It is very rare and causes atrophy of the fat, muscles and sometimes bone typically only on one side of the face. It can last anywhere from 2-20 years before it “burns itself out”. Mine is a rare manifestation of this already rare disease as it is involving my eye and my leg as well. There is no known cure and they don't know what causes it. You can attempt immunosuppressant/ modulation drugs or low dose chemotherapy in an attempt to stop it. Otherwise reconstructive surgery to help attempt to mitigate some of the resulting deformity is an option in the future.

After a very bad reaction to the recommended medication and after exhausting options with insurance to try off label less damaging treatments my eye is still sinking in and face is continuing to waste. I'm also in physical therapy due to the leg involvement as there is concern for loss of mobility over time.

In the entire process of receiving my diagnosis and getting established with care back at home I have underwent a lot of testing, multiple MRI’s, CT scans, and some very expensive infusion therapy as well. Our insurance is denying some of these claims at the moment and coupled with our deductible I’m not sure how we’re going to pay all these medical bills and also keep up with more as we continue to try to treat this disease.

If you are able to give and help us out at all with this please be assured of our prayers and gratitude. If you are unable to give please consider sharing this and praying for me and my family. Although I know and trust that God has a plan for us in this journey it has been such a cross to carry and we could use all the spiritual support we can get. Thank you all so much in advance and God bless you all.