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Vernon Brothers Raise Awareness for Sun Allergy Disorder

One in a million; those are the odds of getting a rare genetic disorder that makes you allergic to the sun.  But in Vernon, two brothers both have the disease.
    For most children, a clear sunny day is an invitation to fun and excitement.
    But for nine-year-old Caul and 10-year-old Cason Cook of Vernon, that's a recipe for disaster.
    "When the sun hits them I'll start itching them real bad because it feels like little fire ants, Cason says.
    "It feels like you're running your hand over a hot stove and somebody's just holding them over the hot stove," Caul says.
    The boys have Erythropoetic Protoporphyria, a genetic disorder which makes them allergic to the sun.
    "We have to wear these bracelets to tell people we can't be under surgical lights," Cason says.
    "They lack an enzyme and they can't break down the porpherins.  It causes photo-sensitivity and they have a really hard time going outside," LeeAnn Cook, the boys' mom, says.
    The family organized "Hat Day" in four Vernon schools to promote National Porphyria Awareness Week, which is April 22 through the 28.
    For a $1 donation to the American Porphyria Foundation, students could wear a hat during class.
    Students were encouraged to wear hats because Cason and Caul often have to wear them to protect their skin while they're outside.
    "We have to wear masks and cowboy hats and all this stuff to cover us," Cason says.
    "We have to wear long sleeves and cut holes in them like they're gloves," Caul says.
    Even avoiding almost all sunlight and bright light, the boys still have to take lots of pills each day to help with the disorder.
    They also have to apply sunscreen every 20 minutes whether they are going outside or not.
    Their parents say it's a different lifestyle, but they want to make sure their sons get to have the same experiences other kids do.
    "We just don't want it to affect their lives so much that they don't want to go outside.  We do everything together.  We hunt, fish, and we try to spend as much time outside as we can," Chris Cook, the boys' father, says.
    Proceeds from Hat Day will be donated to the American Porphyria Foundation to help educate physicians about the disease.
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