Le Shepard says officials at Cook Children's Medical Center in Texas went above and beyond when her 9-year-old daughter was admitted due to severe seizures

By Char Adams
June 20, 2018 05:07 PM
Courtesy Le Shepard/Mom with an Asterisk

Le Shepard says staff at a Texas hospital gave her 9-year-old daughter, Alyssa Shepard, just the joy she needed earlier this year when she was admitted to the hospital due to severe seizures.

At just 4 years old, Alyssa was diagnosed with PCDH19, a form of epilepsy that results in seizures, cognitive delays and other symptoms. For about two years, the illness lay dormant, and Alyssa saw few to no seizures — until November 2017.

“Now they’re back to being really out of control,” Le, of Chico, tells PEOPLE, noting that Alyssa experiences seizures in “clusters,” or several at one time. “She’s had a really rough time … she’s been having those about every week. It’s really hard on her, she doesn’t feel good. You never know when you’re going to have to drop everything and go to the hospital.”

Le says Alyssa has been hospitalized at least four times this year as a result of the seizures. And, during one of her most recent visits in February, the little girl made an unexpected request.

Alyssa Shepard
Courtesy Le Shepard/Mom with an Asterisk

“The nurse came in to do her rounds one morning and she said, ‘Is there anything else y’all need?’ And all of a sudden, Alyssa pops up in her bed and says, ‘I need to get my nails done!’ ” Le recalls.

“It was this really funny moment … then a little while later, a child life specialist walks in and says, ‘I’m here to do Alyssa’s nails! And I’ve got sparkly nail polish.’ ”

Then, the specialist sat next to Alyssa’s bed and painted the little girl’s nails. Le says the pair talked about school and Alyssa’s dog. A photo of the sweet moment showed the specialist carefully applying the sparkly nail polish as Alyssa watched attentively.

“It was so sweet because Alyssa was really freaked out to be in the hospital, and I was really stressed,” Le says. “They just went out of their way to do this really special thing that wasn’t necessary at all.”

Alyssa Shepard
Courtesy Le Shepard/Mom with an Asterisk

Le recently shared her story with Love What Matters, writing that the “manicure absolutely made Alyssa’s day and was a bright spot in an otherwise hard day.”

Now, Le cherishes that sweet moment in the midst of Alyssa’s unpredictable condition. Le says she knows any of Alyssa’s seizures could be fatal, and she lives with that fear each day.

“It’s really terrifying. Every morning you go in to wake her up and you pause at the door and watch her breathe and make sure she’s alive,” Le says.

“It changes how we live our lives. We do a lot of traveling now because it’s like, well I don’t know if my daughter’s gonna be here next summer. If we’re gonna go see the sights, we need to do it now.”

Le and her husband Curt, 39, are also parents to two other children: Noah, 12, and 7-year-old Bradley.