El Paso News

EXCLUSIVE: Local woman with rare disease keeps pursuing her dreams

Wednesday is "Rare Disease Day"

EL PASO, Texas (KTSM) - Today is "Rare Disease Day" a time to bring awareness to those suffering from rare afflictions.

El Pasoan Kayla Villegas knows what it's like living with a rare disease all to well. She suffers from Morquio A syndrome, which only around 3,000 people across the globe are diagnosed with.

The condition causes patients to be missing an enzyme, which is essential for clearing cellular waste from the body. This causes several problems.

Villegas is bound to a wheelchair, has hearing aids in both ears and impaired vision among an assortment of other complications.

Although if you were to say she has an illness she'd be quick to correct you.

"I prefer to call it a challenge," Villegas said. 

She says when she was a child she was misdiagnosed, when she was 6 years old she had to travel to a specialist in Dallas just to get a proper diagnoses. She says the condition is so rare no one in El Paso is specialized for the condition.

She's now 24 and not letting the ailment get in the way of her dreams.

"By May of next year I'll be graduating with a bachelors," Villegas explained.

She's a student at UTEP majoring on social work. She is also a Court Appointed Special Advocate for foster children. She says she wants to inspire and have a positive impact on as many people as possible.

Now she hopes the community will come together to support anyone dealing with a rare disease.

"We really need people to consider individuals as people and not just for what we look like," Villegas said.


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