Leiana Smathers sits on a sofa next to her mom, Jennifer. She is bright, bubbly, and fun, with a quick wit that makes everyone in the room smile. Her thick glasses hint at the struggles she’s had to face in the 11 years since she was born. “I was born with cataracts,” Leiana explains, “but Mom thought that there was cream in my eyes. We went to multiple doctors, and they just said, ‘It will go away when you grow older,’ but it never went away. So then we went to another doctor, and they diagnosed me with cataracts. They had to do surgery to get them out.”
Leiana goes on to describe that the surgery wasn’t completely successful—she ended up getting very sick, and was on a ventilator for two weeks—and when she recovered she had 100% vision in one eye, but only 5% in the other. For Jennifer, the stress of Leiana’s first few months was unimaginable: “When I had her, I was 18, so I was still kind of trying to find my place in the world and it was very overwhelming. It was up and down at first, like ‘Is she going to live, or is she going to die?’
“The surgeries are very difficult,” Jennifer continues. “They’re long, and she was very tiny, so it was definitely an overwhelming feeling, but you’ve kind of got to figure it out and just be strong,” she says. Due to the rare nature of infant cataracts, as well as some abnormal features that Leiana displayed when she was born, a geneticist diagnosed her with Hallermann-Streiff Syndrome, or HSS. HSS is caused by a genetic mutation, and typical symptoms include facial deformations, hair loss, dental defects, and eye problems.
Hallermann-Streiff Syndrome is so rare, Leiana exclaims that, “In the whole entire universe, only 200 people have it!” With her trademark positivity, she adds, “I think that I have it pretty minor compared to most people, so I’m really glad.” When asked how her disability affects her daily life, she responds, “Well, I don’t have very good peripheral vision. I can’t really see around very well, because, you know, this side doesn’t really work. But yeah, there’s not really anything I can’t do. The only thing that I can’t do is be a pilot, and I don’t want to be that anyways, so I’m okay.”
Leiana started working with VisionCorps in Lancaster at three months old, learning over time to overcome obstacles that her lack of vision presents. Now, at 11, she has gained an amazing amount of independence, and nothing seems to stand in her way or dampen her spirits. She has taken cooking and art classes, kayaked, and learned to play the ukulele. She’s played Lady Macbeth in a theater production, rock climbed, and been featured on billboards and television news programs.
“I like playing percussion,” Leiana says, ticking her favorite activities off on her fingers. “I like playing keyboard. I like singing. I did gymnastics. This year I want to do karate, and I like to dance a little,” she says. “I also like to write, and I like to bake, and I like video games.” To her mother, Leiana is an unstoppable force that doesn’t let her disability get in her way, despite the occasional surgery that is necessary for her condition. “I mean honestly,” Jennifer admits, “we never know what’s going to happen with her vision. So we just try to do the best we can to let her live and enjoy her life.”
Leiana has a lot of life to live and is excited about her future. “I want to be a video game designer because I love video games and coding and stuff. And I want to be a baker because I love sweets, and I like mixing the ingredients and putting on the icing. I want to be a singer because I love to sing, and I want to be an author because I love to write books and stories,” Leiana laughs.
To Leiana and Jennifer, attitude is everything. When it comes to having a disability, Leiana offers sage advice: “Don’t let anything stop you. Keep going, and if anybody says that you can’t, just ignore them.”