GREENWICH â€” With two loud thuds, 12-year-old Pierluca Balestra jumped down the first and then second flight of stairs of his home, his long legs propelling him far and high into the air.
â€śPierluca, donâ€™t jump down the stairs,â€ť his mother, Mabel, called after him.
Pierluca, a seventh-grader at Central Middle School with tousled brown hair, bounded back up the stairs and settled back into his game of Minecraft.
Standing up, he is almost taller than his mother. But he squats in his chair, drawn as close as his desk permits, and brings his eye as close as possible to the screen of his extra-large iPad.
Pierluca has childhood glaucoma and can see out of only one eye, but that does not stop him from flying up and down the stairs of his home, which he navigates by memory, feel and limited sight. He likewise can navigate almost every greenspace in Greenwich because a paraprofessional took him to every park and open place in town when he was a toddler.
Although he can move through the world with confidence, unless his mother, Mabel, or his sister, Sofia, is in front of his face, he cannot recognize either. He cannot read books, food labels or instructions without magnifying the words to a 50-point font under the lens of a large computer crowding his desk.
That is, until now. Pierluca recently received the â€śORCAM My Eye.â€ť The device is as small as an index finger, weighs less than an ounce and snaps to almost any pair of glasses. It recognizes faces, barcodes, colors and money, and has a time-telling feature. Whenever Pierluca points to printed words on a page, the device reads the words back to him.
His mother surprised him with the device in partnership with ORCAM, which sponsors â€śGood Morning America.â€ť
In a segment broadcast on â€śGMA,â€ť Pierluca talked about how everything that is not right in front of his face is a blur, and said a device that reads to him whenever he points to words would be â€śamazing.â€ť He then went to low-vision optometrist Bryan Wolynskiâ€™s office in Manhattan, where he tried on the device and was told with the camera rolling that the ORCAM was his to keep. In addition to the device, ORCAM and â€śGMAâ€ť gave him his first bound book, â€śThe Giver.â€ť
â€śHe took it on so quickly,â€ť Wolynski said. â€śHe picked it up, and it wasnâ€™t much training for him.â€ť
The ORCAM My Eye, developed in 2013 and still under refinement by a team of 200 Israeli scientists, is the only product of its kind. A Chinese company is trying to reverse-engineer the device, but that product is not on the market, Wolynski said.
Wolynski is amazed at what ORCAM can do. .
â€śI love to say ORCAM is the best-kept secret in the low-vision world,â€ť said Wolynski who, in addition to his Manhattan practice, is a consultant for ORCAM. â€śThis is something that is totally different and new, and itâ€™s changing a lot of things in the field.â€ť
The youngest user is 7 and the oldest is about 100, with the device helping people with macular degeneration, pediatric glaucoma, hereditary retinal diseases, blindness and those with some vision, Wolynski said.
Despite its wide applicability, ORCAM is not the norm in assistive tech. Most go to an optometrist or assistive tech teacher, who gives people with low-vision software that reads to them along with a magnifier for texts.
Pierluca is the prince of assistive tech, but the ORCAM â€śis the coolest piece of tech I own,â€ť he says.
The 12-year-old benefits from many pieces of assistive tech: his computer that enlarges all print; a device that connects his iPad to the Smartboard at the front of his classroom; and audiobooks. A visually impaired instructor is teaching him how to use Voice Over, a software built into Apple products, over Skype.
â€śIt has made my life a lot easier,â€ť he said back at home. â€śI would definitely recommend it for its functionality.â€ť
Pierluca recommended the ORCAM but with one caveat â€” cost. While the device was free for him, he said the expense might be prohibitive for some users. And he is right.
Assistive technology is not covered under any medical plan, even Medicare, Wolynski said. Advocates are trying to lobby for the inclusion of devices for hearing and vision, especially since the nation is seeing more eye diseases related to aging.
â€śItâ€™s not fair,â€ť he said.
State rehabilitation agencies can help pay for these devices for students, people who are working, and veterans if they prove they need it and would be able to use it correctly.
â€śItâ€™s something that Iâ€™m passionate about,â€ť Wolynski said. â€śAs an optometrist, I want more things covered for people.â€ť
Tech for life
Assistive technology has evolved since Mabel began researching childhood glaucoma. The Balestras have an assistive technology consultant who constantly looks for the best technology to help Pierluca in school. The consultant observes him in class multiple times each year and finds programs that grow with him. The ORCAM, for example, works even if a patientâ€™s vision changes.
â€śThere are so many things, you could get distracted switching in and out technologies,â€ť Mabel said. â€śMost of the tech he uses are amazing for print disabilities as well.â€ť
ORCAM was developed specifically for visually impaired people, but it has also been useful for people with dyslexia and reading disabilities, Wolynski said.
Depsite these advances, the Balestras still have Pierluca learning braille, which is still seen as a surefire way for blind people to get jobs.
Seventy percent of blind people are unemployed, said Greenwich resident Alan Gunzburg, who leads the First Selectmanâ€™s Commission on Accessibility.
â€śItâ€™s not because blind people canâ€™t do the job, but employers arenâ€™t sure that blind people can do the job,â€ť he said. â€śTechnology levels the playing field. If I can do what you can do because technology helps me do it, what is the difference between you and me? None.â€ť
Gunzburg met the Balestras years ago, and he has connected them with consultants, experts and technicians to help Pierluca along the way.
â€śHeâ€™s a smart kid. Heâ€™s going to go places, for sure,â€ť Gunzburg said.
He sat with Mabel in a district meeting for Pierlucaâ€™s individualized education program for school and helped her bring in specialists to work with him, taking technology used everywhere and adapting it to the classroom so that a visually impaired child like Pierluca can do what typically able children do.
This â€śis pretty simple blocking and tackling that the Board of Education knows, although sometimes they have to be reminded,â€ť Gunzburg said.
Developing curriculum for blind students is difficult because district educators have to treat every special education student as an individual, and blindness has such a wide range of ways of presenting itself in children. Put 20 blind people in a room and each will see the world in a different way, Gunzburg said.
Gunzburg said the ORCAM that Pierluca uses is an â€śoutstanding productâ€ť that has undergone an â€śunbelievableâ€ť transformation over the last five years. Wires used to connect the ORCAM to glasses and to a box, bigger than an iPhone, that hooked onto a belt.
Like most tween boys, Pierluca is into video games and making videos about them for his YouTube channel. But after his trip to â€śGood Morning America,â€ť he added the viral segment to his channel, and was talking to his mom about the hundred views it had gotten over the last day.
â€śHeâ€™s a little fame-struck,â€ť Mabel said.
â€śI donâ€™t care about myself in this,â€ť Pierluca said. â€śI care about people knowing these things exist. I hope I can achieve that with articles.â€ť