BERLIN — With a little help from an always generous local community, a Berlin teen legally blind since birth has a shot at an enhanced life with technologically advanced electronic eyeglasses, but the product comes with a stiff price tag.
Lexi Jones is a 13-year-old local resident who just completed the sixth grade at Berlin Intermediate School as a third-quarter honor roll student. Like many students her age, she is enamored with technology and her mind is constantly trying to solve problems. She loves to “listen” to YouTube videos that have taught her many unusual skills for a middle-schooler, including how to perform intubation, the benefits and treatment of Afib and how to perform CPR, perhaps in deference to her mother, Meghan Gorrera, a nurse at Atlantic General Hospital.
Her progress has been amazing and she has overcome so much in her young life, but her blindness remains a major obstacle, according to her mother. Lexi was born at just 24 weeks and weighed only one pound and 14 ounces. After delivery, she was taken by helicopter to Johns Hopkins Hospital in Baltimore, where she stayed for four months. During that time, Lexi suffered a grade-four brain hemorrhage, which required five brain surgeries and a shunt placement.
Lexi also developed a seizure disorder and was later diagnosed with autism. A week before she was set to be discharged from Hopkins, her mom was told Lexi had developed an eye condition called retinopathy of prematurity, or ROP. The disease occurs in premature babies and causes abnormal blood vessel growth in their eyes, ultimately detaching their retinas.
“There was hope that a laser surgery could be performed to stop the abnormal growth,” said Gorrera this week. “Being at Hopkins, Lexi was being treated by the best doctors at the Wilmer Eye Clinic and she had the surgery performed in both eyes. Sadly, shortly thereafter, we received the news that the surgery was not successful and that both retinas had detached.”
Undaunted, a doctor at the Wilmer Eye Clinic at Hopkins made another attempt at correcting Lexi’s vision, or at least improving it, with a second round of surgeries.
“This time, both surgeries were successful,” said Gorrera. “However, there was so much scar tissue and damage to her eye that Lexi was left with an estimated 20/600 visual acuity, which is legally blind. She is able to identify shadows and light perception, but only within a few inches of her face.”
According to Gorrera, Lexi has been learning, reading and writing in braille. She receives orientation and mobility training from professionals at the Maryland School for the Blind and is learning how to use a walking cane. All the while, Gorrera has held out hope for a breakthrough.
“I’ve always been told there was nothing else that could be done for Lexi and her vision, that it would never get better and may actually get worse,” she said. “That all started to change a few months ago when Lexi brought me a recording of a TV show about eSight Eyewear. She came to me and said ‘Mommy, I need these glasses. They make blind people see.’”
The eSight company has developed an opportunity for Lexi and many others to improve the quality of their lives. The small company of just 18 employees is branching out and heading east to expose the amazing product to those like Lexi who can benefit the most from the electronic eyeglasses. The glasses combine a camera, display technology and advanced computing to deliver a real-time video that enables sight for people with vision loss. Users have complete control over the image they see, which means they can enhance, magnify and adjust the image to ensure their eyes can best interpret their world.
Gorrera said she watched the television program in tears and explained to Lexi how the glasses wouldn’t be able to help her. Then, she began her own research.
“I called the eSight corporation out of Ontario, Canada and talked with them about the possibility of this eyewear working for Lexi,” she said. “At that moment, she became a candidate and we accepted the next available consultation appointment closest to us, which happened to be in New Jersey.”
Gorrera and Lexi traveled to New Jersey on June 11 for the consultation with the eSight representatives and the results were almost immediate.
“That’s when I saw my world and her world start to change,” she said. “For the first time in 13 years, Lexi was able to read a vision chart three rows from the bottom line 10 feet away from her. I stood across the room and she was able to tell me what I was wearing and that her Pop-Pop had really gray hair.”
Lexi’s vision improved dramatically assisted by the eSight eyewear.
“With that revelation, I began to cry and realize that for once, she may get the opportunity that she deserves so much, to be able to see the world around her and become more independent, to learn and grow,” she said. “Within those few hours, this technology has already changed so much in our life and has opened Lexi up to so many possibilities.”
The eSight glasses offer Lexi a chance at an enhanced life, but they come with a stiff price tag. The glasses cost around $15,000 and are not covered by insurance. To that end, the family has launched a Go Fund Me campaign in an effort to raise money to purchase the special electronic glasses. In the first week, the Go Fund Me campaign has raised more than $6,100, as of Thursday morning, and while the goal is still in sight, there is much work to be done. Lexi’s Go Fund Me page can be found at http://dm2.gofund.me/wvqavg.
Lexi is the second local teen with ROP to seek the special eSight eyewear this year. In the spring, local teen and Stephen Decatur student Caleb Conner, 15, who is legally blind in his right eye and severely near-sighted in his left eye, was a successful candidate for the eSight special electronic glasses. Like Lexi, Conner’s family started a successful Go Fund Me campaign to offset the cost of the special eyewear, which was not covered by insurance. His Go Fund Me campaign was successful in raising the $16,500 in a short time and he got the glasses weeks later.
