GIFT OF SIGHT
For most of us, eyesight is part of the package we’re born with, but for Yocdiel “Yodie” Manso, it’s a mountain he has to climb.
And with help from Dr. Jeffrey Kenyon, the founder of Blackstone Valley Eye Care, he’ll get closer to the top this holiday season.
A fourth-grader at Citizens Memorial School, Yocdiel (pronounce Joe-Dee-Ell), was born with albinism, a rare genetic condition that has adversely affected his eyesight.
“It was really his personality that caught me,” says Meredith Mahoney, a teacher at the Sherman Center for Students with Visual Impairment at Rhode Island College. “He was curious and really excited to learn. Based on his visual impairment I realized we could get some tools in place to make things more accessible to him.”
Based on Mahoney’s suggestion, Kenyon decided to make Yodie the beneficiary of Holiday Lights For Sight. Kenyon founded the fundraiser last year with the intent of making it an annual benefit for a visually impaired child.
It all revolves around a glittery holiday display on the grounds of Kenyon’s Blackstone Valley Eye Care, located at 385 Mendon Road, consisting of some 20,000 individual lights. Visitors are encouraged to make a donation to Yodie in a box set up as part of the display, which is switched on Friday through Sunday from 6 to 8 p.m. from the day after Thanksgiving until Christmas.
The lights wrap around the facade of the building, including the roof, plus two large Christmas trees, multiple small trees and two ornamental structures Kenyon calls “dancing arches.”
“We added about 5,000 lights this year,” said Kenyon. “Our patients tell us how much they love coming to see them. It’s great because we’re able to help a local student in the
process.”
Donations can also be made to Yodie online, because Kenyon has linked the Holiday Lights for Sight to a gofundme campaign at https://www. gofundme.com/holiday-lightsfor-sight-2018.
Albinism is considered a rare condition, affecting fewer than 1 in 20,000 individuals worldwide, according to various medical authorities. A child has a 25 percent chance of being born with it only if both parents are carrying the necessary genetic material to pass along to their offspring.
But anyone who’s ever watched TV newsman Anderson Cooper do his show on CNN or watched guitar legend Johnny Winter on YouTube knows something about albinism. The condition affects a gene associated with the production of melanin, the main ingredient responsible for providing humans with hair and skin color. The gene is muted in those born with the condition, resulting in hair that’s silvery-yellow to platinum and a complexion that’s very light.
What’s less well-known is that melanin is also critical in the development of nerves associated with the eyes. Many of those born with the condition, like Yodie, must grapple with some level of visual impairment.
For Yodie, the challenges have been staggering. He suffers from a general decrease in visual acuity, or sharpness; an extreme form of farsightedness known as hyperobia; and a pronounced sensitivity to light, or photophobia.
Eyeglasses will never make Yodie’s eyesight perfect, though corrective lenses do improve his vision a bit, according to Mahoney. There
are few special tools available that would greatly enhance his abilities, both at home and at school, however.
Among other things, Yodie needs a monocular, a device she describes as a pocket-size telescope. Users can conveniently carry it around to home in on objects in the distance and pull them into sharper focus.
He also needs a TV-like device known as a video magnifier which can be used to zoom in on print images to make them larger. She’s also suggested that Yodie get a pair of sturdy sport goggles to protect his eyeglasses.
“He’s a very active boy and he keeps breaking his just running around and doing what normal fourth-grade boys do,” says Mahoney.
Casandra Munoz, a Woonsocket Education Department social worker assigned to Citizens Memorial School, says Yodie and his classmates were elated when they found out recently that he’s been chosen as the beneficiary of this year’s Lights for Sight campaign.
“He said, ‘Wow!’ and he smiled pretty big,” said Munoz. “All the students clapped when I announced it in class.”
Mahoney, who assists visually impaired pupils at various schools, has been working with Yodie since September. The son of Lismarie Manso of Morin Heights Boulevard, he has two older brothers, neither of whom was born with albinism.
This is the second time Mahoney has worked with Kenyon to find a worthy ben-
eficiary of a gift from Holiday Lights for Sight. He also reached out to her for suggestions in the inaugural installment of the campaign, which raised about $8,000.
The proceeds were used to purchase a special computer with a Braille-modified keyboard for Jalen Rodriguez, a blind Woonsocket High School student who was in particular need of the equipment as he prepared to enter college.
Kenyon is hoping for a repeat performance of the “amazing support” Rodriguez received in the encore for Yodie.
“It symbolizes what the holidays are all about,” he said.