lhon is genetically passed down from a mother to her children and primarily affects young adult males once we got through all the urgent things then we got to how do we get his life normal again it affects approximately one in 50000 people and for jeremy normal equals sports lisa poincenot said but everything came to a halt one day nearly two years ago and the neurologist almost certainly hasnt heard of it said dr alfredo sadun one of the leading researchers on lhon devloos vision had gone from 2050 to 20500 and he was showing symptoms of profound visual impairment devloo like poincenot has refused to let the disease knock him down he had just earned his learners permit and spent most of his free time hanging out with friends and skateboarding over the course of six months the tests continued and devloos vision continued to get worse he said in the fall of 2008 poincenot was a college sophomore when he began to see the world very differently i hit the shot came off the club perfectly very often the ophthalmologist who first sees the patient has never seen a case of lebers and doesnt recognize it and maybe hasnt even heard of it when i got on my board for the first time after being blind i felt really timid skating he said it went in he said one of the first things he wanted to do after hearing the diagnosis was get back to skateboarding i was like holy crap i said mom when do blind people play golf at midnight devloo said he went to see the eye doctor and what he thought would be a small shift in his prescription turned into a drastic change poincenot had won the championship i saw like five specialists in seven days doing a bunch of different tests like blood work mris seeing neurologists optometrists ophthalmologists just general surgeonsnone of them knew what was going on devloo said finally devloo was diagnosed with lebers hereditary optic neuropathy or lhon a rare progressive disease that leads to loss of central vision with the help of his father lionel poincenot who served as his guide jeremy poincenot started playing golf again in the middle of history class he noticed his vision had become blurry and he could no longer read the words on the overhead projector thats kind of weird thanks to his mother poincenot was diagnosed quickly and able to start treatment early poincenot was given a prescription for medication that doctors hoped would restore his vision in his eye before a followup appointment i didnt think that was a possibility jeremy poincenot said he went to the optometrist and noticed that he couldnt see anything out of his right eye i went slow but it still felt unbelievable to still be able to be on my board and know that im not going to let being blind stop me from doing what i love to