Medical Treatment for my rare disease

I am raising money to help me get proper treatment for my rare genetic disease called Usher Syndrome. It is a rare disease that as of today has no cure. Ushers is otherwise known as the deaf/blind syndrome. Yes I am blind and went blind in a span of about 8 months.I received a bad gene copy from my mother and my biological father on the same gene marker spot which I was told happens only 1 percent of the time in couples. That is why this is so rare. I have tried the only two treatments to help with the pain and swelling of having Retinitis pigmentosa and Macular Adema but both have failed. I too am hearing impaired but seem to get by half the time, I do not ever talk on the phone because I cannot read lips over the phone. It is a very lonely disease. I am currently in the process of seeing if Cochlear Implants can be a option.
I need to raise money to help my parents afford the doctor bills at Casey Eye Institute. At Casey they have specialist that work daily with Ushers. My insurance does not cover my blindness because there is no cure for RP nor does my insurance pay for my plane ticket or my hotel when I have to travel. Every month my dad has to purchase a new set of lenses for my frames till recently I was told there is no stronger and I have to learn to deal with it. I see out of a tunnel with no side vision, and I have Floaters in my eyes. I am 15 years old and I have big goals for my life. I am a A plus student in a small mainstream school and do not expect "special treatment" from anyone. I work help my mom with my siblings. I know Braille and I am learning how to adapt to my changing world that seems to change every morning I open my eyes. My dad is a truck driver and works sometimes 70 + hours in a week. My mom, though she is a stay at home mom, she never stays at home because she is usually taking me to one of my doctors appointments atleast 3 times a week. My next office visit for Portland is 4/1/2014 and the bill will cost my dad 3500. This includes the necessary genetic blood tests and another ERG and visual field tests, etc.

Donations

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  • Anonymous 
    • $105 
    • 90 mos
  • Anonymous 
    • $5,000 
    • 91 mos
  • Laurie Robinson 
    • $50 
    • 91 mos
  • Gary Yaney 
    • $100 
    • 92 mos
  • Theresa Duncan 
    • $50 
    • 92 mos
See all

Organizer

AngelaandKamryn Bennett 
Organizer
Redlands, CA
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