HES is short for Hypereosiniphylic Syndrome, a rare blood disorder that occurs when a person has very high numbers of eosinophils.
Now that I've given background, here's my story...
Two years ago I had a heart attack at the age of twenty. Days after my release from the hospital, I was rushed to my local hospital where I had to have emergency heart surgery. I was in the ICU for 7 days until the fluid drained completely. I was then diagnosed with HES. Since there are no doctors in Illinois that treat HES I was referred to specialists at the University Of Wisconsin - Madison where they are working to help me get the proper treatment. I have to drive more than six hours to the university because the doctors there are the only ones in the Midwest region who can treat me. Now, I'm on various medications which are helping control my eosinophil count. I've been on prednisone consistently for 2 years now. I'm trying not to give up, but it’s hard not knowing how you're going to feel when you wake up in the morning. Over the past two years I have accumulated thousands of dollars worth of medical and insurance, bills because of the medications I have to take and the specialist I have to see. With HES being so rare some treatments are not covered by my insurance. There is no cure for HES, but there is a treatment called mepolizumab that could help me, but it has not been FDA approved. Right now there are only trials for mepolizumad in the US. I took a trip to Florida to meet with specialist who have the mepolizumad but things didn't go as planned. I'll admit that I am scared & I can't do this alone. My illness has caused me to miss many school days which has put me off track for my 2015 graduation. School is important to me and I'm not going to let HES stop me from excelling in my academics. The money raised will be used to help pay not only my medical and insurance bills but for also my housing and education to help me get back on track with school. I’m admitting that I need help. Writing this was very hard for me because I never expected to be sick one day. I never expected to ask people for help. I’m living every day with a smile on my face because I know it gets better. I have to be strong for me, and I have to be strong for myself and for my family. I have a story to tell!
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