Lenn's photoallodynia treatment

Lenn has a rare condition called Photoallodynia. This means that light causes physical pain to his eyes and spreads across his face. Artificial light is the worst but bright sunlight is bad too. This makes him unable to look at any screens; TVs, monitors, laptops, tablets, phones. He is also unable to work or drive. So he is mostly stuck at home in the dark. Our 3-year old son understands pretty well that daddy can’t play outside or watch his favorite cartoons with him.

Lenn is seeing specialists at KU Eye Center in Prairie Village (Kansas City). Only one doctor had any idea what this condition was and even then it was just something he has read about but never seen before.

Lenn is taking an experimental 6 month treatment called Autologous Serum Tears. They take his blood and separate the proteins to make eye drops with it. There has been no improvement yet, but it is expected to take at least three months, if not the whole six months. This treatment is not covered by insurance.

We are asking for help with travel, Kansas City is an hour away, and medical expenses. While Lenn currently has medical insurance, that is only expected to be active until September. If this treatment does not work at 6 months Lenn will be referred to specialists in another state.

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