A shrine to the Virgin of Guadalupe, encased in brick and glass, stands before the steps to the Hernandez home near Kiest Park.
An enormous portrait of another queen dominates one wall of their living room. It’s the quinceañera portrait of their only daughter, 18-year-old Aylin. She’s wearing a mint-green gown with long sleeves, a tiara atop her long, curled hair. She looks happy and pretty, but those feelings, for her, can be elusive.
There are things Aylin Hernandez can’t do.
Joining the basketball team, driving and traveling alone, for example, are out of the question.
Hernandez was born with the fragile skin disorder epidermolysis bullosa. Her body does not produce the protein needed to hold the layers of skin together so the slightest friction results in blisters and sores.
Even though she has her limits, Aylin is a successful student at Bishop Dunne Catholic School, expected to graduate this month. She’s a typical teenager, always on her phone. She loves watching “Pretty Little Liars” on Netflix. And she’s a huge fan of the rapper Drake. She wants to go to Disneyland and to visit Drake’s hometown, Toronto.
On the other hand, her daily routine isn’t typical.
Every night, her mom has to help her shower. And every morning, she has to treat the sores covering Aylin’s back. Every morning, Aylin cries from the pain.
Besides that, her body is constantly in a state of healing, so she’s easily exhausted.
She wants to become a psychologist so she can work with children in the hospital, just like the people who helped her. The torment of daily physical pain, plus the emotional pain associated with looking different, has taken its toll on her psyche.
“People were always looking and pointing at her,” says Aylin’s mother, Mayra, in Spanish. “This would get me so mad, and I would talk back to them. We live in a world where society judges without knowing. Aylin used to hide behind me when this would happen, and I would tell her there was no reason to do so.”
Aylin is quiet, serious and not very friendly, Mayra says. She gets mad easily.
“Maybe that’s because of the attitude,” the world shows her, Mayra says.
But she’s also very creative, and she loves doing crafts.
Aylin’s condition caused her fingers to fuse to her hands. She had a couple of surgeries as a child to correct it, but the fingers fused back again, and now only her thumbs are free. But she’s found ways to write and use a keyboard.
“She finds ways to adapt. I don’t really see her making excuses,” says Bishop Dunne director of guidance Mario Root. “I can’t imagine her having gone anywhere else. We’re really proud of her, and we’re proud to have her among our graduates.”
It was a long road. Between kindergarten and sixth grade at Santa Clara of Assisi Catholic Academy, Aylin’s mom went to school with her every day, all day.
The teasing from other students was more than Aylin could bear alone.
“It got to the point where she didn’t want to go to school,” Mayra says. “She felt tired and like she couldn’t take it anymore. I told her she had to go to school and that I was going with her.”
Things changed in seventh and eighth grade. Kids weren’t as mean, and Aylin wanted some independence.
By ninth grade, when she entered Bishop Dunne, Aylin’s mom came to school only to bring her daughter lunch.
Now that she’s a senior, Aylin says, she’s comfortable. She talks more and participates in school activities.
Aylin’s mom says people would be surprised to know that Aylin actually could be a good basketball player. Mayra and Aylin’s dad, Juan, have played since they were kids. Despite her physical limitations, Aylin has figured out ways to shoot the ball, and she almost never misses, Mayra says.
Aylin also has a 7-month-old brother, Leonardo. When she first found out her mom was pregnant, she was mad because she was afraid the baby could have her inherited skin condition.
But once she found out it was a boy, her attitude changed.
“I told her, ‘It’s going to be a boy, but you are the queen,’ and she would just laugh.”
Ericka Rodriguez contributed to this report