Classmates Rally Around Vernon Students - KAUZ-TV: Newschannel 6 Now | Wichita Falls, TX

Classmates Rally Around Vernon Students

One of the oldest rules in the book: No hats in school.  Friday the rule was broken in some Vernon schools all in support of Porphyria Awareness Week. 

The rare genetic disease makes skin extra sensitive to UV lights.

5th grader Cason Cook and his brother 3rd grader Caul both have the disease and are happy their classmates support them.     

Cason said, "It feels good because they want to help some people brought extra for this, for other people."

Students paid one dollar to keep their caps and all of the money is going to the American Porphyria Foundation.

Caul said, "Everyone in the world that has it, we just gotta fight through it, wear sunscreen, wear long sleeves."

I asked the boys if they feel like normal kids."Not really, every thirty minutes or so we have to put sunscreen on each other and then have to come out but our other friends can just stay out almost all day."

Porphyria affects less than 200,000 Americans, but for Cason and Caul, the disease means daily medication. 

The boys each take upwards of 4 pills a day, allowing them about an hour and a half at a time in the sun.  Still they're completely covered and constantly applying sunscreen.

"We just gotta deal with it".

Even though the boys lives are drastically different from others their age, they still do whatever they can to just be kids.

"We go hunting, we go fishing, we do everything together."

The executive director of the American Porphyria Foundation said a revolutionary treatment is entering the third and final phase of F.D.A. testing. 

The treatment could be ready in as little as a year and when its approved, it will mean Porphyria patients can stay in the sun 11 times or more longer than they can right now.

To learn more about Porphyria visit the American Porphyria Foundation.

Jack Lamson, Newschannel 6

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