Here’s why it’s so important:
Towards the end of 2011, I started having odd, small symptoms. They progressed into 2012, the in the spring/ early summer, I became very sick, psychiatric symptoms, seizures, the loss of all body and brain controls, I didn’t know my own family, couldn’t read or write or talk, barely walk and move, and almost died because of being misdiagnosed.
When I stumbled upon a book a few months after miraculously leaving that hospital, I knew in my gut this was the disease I had. When I started relapsing in 2013, we had to start fighting. We begged and pleaded with every Dr or nurse we met (and since I was in bad shape, it was quite a lot!). After months of this, and my illness progressing fast, we got the testing and it was confirmed. I have a disease that most doctors and medical professionals have never even heard of, let alone know anything about or how to attempt to treat it. Today, because of lack of knowledge on the disease, I have permanent damage. My short term memory is beyond awful, my long term memories are being effected worse each day. I have cognitive issues, physical problems, and a slew of other things that not only myself but my husband and son have had to learn to deal with as well. Not to mention what they witnessed me go through. This disease effects families, not just the individuals who have it.
There are sadly others that have similar stories. Some who have lost wives, husbands, daughters, sons, moms and dads, loved ones who didn’t get to their diagnosis until it was too late, or weren’t taken seriously, or given the right medications, or just had doctors who had no idea what was happening to them.
This fundraiser is so important, to help raise money for the AE Alliance. The funds go for research, trials, and education. They work tirelessly to stay up to date on accurate information, to connect patients and their families to knowledgeable, experienced doctors, to other patients for support, and the founders host this race each year in memory of & to honor their young daughter, who they lost to AE. My team name is to honor my doctor, the neurologist who has continued to save my life over the past 5 years. Through so many relapses I lost count (seriously!), he’s never given up. He constantly thinks outside the box to try & help me. He researches, is in contact with many of the other top Drs for AE, always looking out for the one thing that might help more than the last, and not just for me. He’s helped many others with AE & continues to be our “Ray Of Hope” through all of the chaos this disease brings. His name is Dr. Rae Grant, and that’s how I landed on our team name! :)
Please help us in supporting our cause! My personal hope is that no one ever has to go through the struggles and pain we have, the losses and tears and the suffering so many of us have. We are a family, we supper each other, we laugh and cry and understand together. Thank you for helping us continue our journey, so that we can continue to help!