Meeting developmental milestones is something the Sinner family never thought would be possible, but support from Beyond Blindness has provided hope for a bright future.
For 14-month-old Lilliana, Beyond Blindness is a steady presence in a world that’s all a blur.
Just three months after birth, she was diagnosed with foveal hypoplasia, a rare condition often associated with low vision and rapid, uncontrollable eye movements (nystagmus). “The pixels she sees through are all blurry and nothing is clear,” explains Jesi Sinner, Lilliana’s mom.
There is no surgery, medication, or treatment that can improve Lilliana’s vision, and with an undeveloped fovea, glasses also won’t help. Her neurologist warned the family that she would never walk, crawl or even roll over.
“When we first got the diagnosis, my world came down,” Jesi says. “I worried about what her life would be like and didn’t know how to help her.”
Fortunately, Lilliana’s grandmother knew where they could find a program that would help her thrive. As the executive director of the Intervention Center for Early Childhood, an organization Beyond Blindness frequently collaborates with, she was familiar with our integrated services that support the whole family and the child’s development.
Since starting 1:1 services at Beyond Blindness, Lilliana has exceeded all expectations set by her doctors — she is an expert at crawling and has started to take small steps. Though Jesi was also told it would be impossible for Lilliana to see small things, she can now find tiny objects on the ground and pick them up with ease.
The time, care and attention invested by Lilliana’s therapists and teachers at Beyond Blindness has made all the difference, says Jesi. A year ago, she couldn’t see things three feet in front of her, but now she can recognize faces, voices, and facial expressions, and will even smile back at the family. “We live in Long Beach, but driving to Beyond Blindness is worth every minute of the commute,” Jesi says. “She is doing so good it just makes me want to cry.”
Jesi and Lilliana’s two older sisters are her biggest cheerleaders, celebrating every accomplishment no matter how small, whether it’s learning to pick her legs up or scribble on paper. She’s discovering newfound confidence as she begins to babble, vocalize, and learn to sing along to her favorite songs like “Wheels on the Bus.” During story time, she loves to see new pictures of colors and animals and will even follow someone’s lead by pointing to different objects in the book.
“I know Lilliana’s eyesight can never be fixed, but at Beyond Blindness she has made so many improvements that it gives me hope for her future,” Jesi says. “They have showed me there are other families with children who are experiencing similar challenges. You feel like there is a place for your child and she is no different when she is there. The community came together to support us, and I knew we weren’t alone.
“To other families, I would say — don’t give up,” Jesi adds. “Don’t ever underestimate anything regarding the power of children in this program. I now truly believe anything can happen and every milestone can be achieved.”