Help me get to Mayo Clinic Neurology
Donation protected
As some know, I have been fighting more than one complex neurological illness since 2015. I became terribly ill and for a year was wasting away. Thyroid cancer was found, but was not the root cause of my condition. Then antibodies associated with a rare neurological autoimmune disease called Lambert Eaton Myasthenic Syndrome were discovered. I went through a series of tests and meetings with neuromuscular specialists, who gave me a 'working diagnosis ' but could not understand my presentation. Finally, in 2018, a genetic disease called Acute Variegate Porphyria was discovered and proven with genetic testing. Family members have it too, though thankfully not my daughters. It is a brutal, potentially life threatening disease that attacks your skin and neurological system, but the way mine presents remains mysterious to doctors. I suffer greatly because there is no clear answer as to what has damaged my systems. This illness has stolen my health, my role as a parent , my ability to be a friend, a partner, to work ...it has taken almost everything but my determination . I am now being referred to specialists at Mayo Clinic in Scottsdale who will try and pinpoint what is happening in my neurological system and how I can best be treated. It is my 'last shot' .
Unfortunately insurance does not cover all costs, and I will need to pay for airfare, meals and lodging, possibly appointments as well. If you can help me, bless you and thank you for your patience on this roller coaster ride with me. I just want to be as well as I can be for my babies.
Unfortunately insurance does not cover all costs, and I will need to pay for airfare, meals and lodging, possibly appointments as well. If you can help me, bless you and thank you for your patience on this roller coaster ride with me. I just want to be as well as I can be for my babies.
Organizer
Eryn Sallee
Organizer
Seattle, WA