My name is Sherrene Werner and I am starting this GoFundMe account for my son Kamden. He is 14 years old and was just recently diagnosed with having Leber's Hereditary Optical Neuropathy or (LHON). This is a hereditary disease that effects the mitochondrial DNA and is passed maternally from mother to children. It affects adolescent boys ages 15-25. LHON is a disease that causes your optic nerve to degenerate and causes permanent blindness that is not curable. One morning my son woke up with loss of vision in one eye and two days later had lost vision in the second eye. As you could imagine my son and our whole family were devastated. He had to quit playing football and had to have all his classes at school changed. He will also need to learn how to use a cane and CCTV to navigate school and to complete his work. Life as he has known it for 14 years has changed. Shapes and colors are all he sees now and must rely on the help of others to navigate outside our home. Driving, which has been something he has looked forward to for awhile now will no longer be an option for him. As with any family that has tragedy strike them, you try to understand and learn all you can about it. As a result of this we have learned about a drug called Idebenone. Idebenone has shown very promising results with LHON patients when taken with vitamin C and B2. This combination works best at the first onset of this disease. As soon as we found out about this disease we had Kamden start to take Idebenone and has shown some improvement in vision during that time. He has been taking it for about a month now and it must be ordered online. The good news is that Idebenone has received approval from authorities in Europe as a safe and effective treatment of LHON at 900mg per day but the bad news is that we found out today that it is being developed by a publicly traded pharmaceutical company that intends to distribute it worldwide as a prescription-only drug but not in the U.S. This will make Idebenone no longer available for us to purchase online once the online supply has been exhausted. We hope and pray that with the help from you we can do a one time purchase of enough Idebenone for Kamden to last 1-2 years until Idebenone becomes available in the U.S.
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