Through a donation from Virden Lions Club to purchase a visual aid, 11-year-old Connor Holden, son of Grant and Amanda Whitehorn, has a new lease on life.
Before the age of 2, Connor was diagnosed with Lebers Congenital Amaurosis, a form of blindness caused by a gene mutation.
Amanda, his mum, explains that there are some 21 genes that can affect sight in this manner. Other organs can also be affected; however, Connor is fortunate as his problem is confined to his eyesight.
Although Connor has some peripheral vision and has some light and shadow perception at present, with no treatment yet found for this extremely rare condition, doctors predict his sight may worsen.
Connor, one of five children in a blended, turned 11 and is in his first year at Virden Junior High. His mum recognized this as the right time for their son to gain some independence. He needed something to help him navigate his surroundings.
The Whitehorn family first found out about a device to help him ‘see’ from a person from the Department of Education who came out periodically to help Connor.
Then, from an online group for mothers with blind children, Amanda discovered the device, the OrCam MyEye. “I actually found it on TicTok, as funny as that seems,” she says.
“I was talking about it to his dad. Connor has got crazy (good) ears and he said, ‘Oh are you talking about the OrCam?’ He knew about it.”
However, the $5,800 price tag was beyond their resources, so after seeking help through Manitoba Health and then through the family’s insurance and finding there was no help there, Amanda approached the Lions Club. There was a vetting process but it really didn’t take long until they had the device she says.
Connor’s need and the availability of the OrCam MyEye device seemed like something the Lions could help with. The club’s communications member Barry O’Grady said, “We approved funding for the OrCam MyEye. Amanda, Connor and Grant were able to attend our last meeting to demonstrate this device as well as demonstrate Connor’s ability to play the piano from his sense of hearing.”
It was a win in the eyes of the club. “All of our Lions, both men and women, were very moved, very much a feeling of gratification,” said O’Grady.
This OrCam attaches to Connor’s glasses, and is about the size of a finger. This wearable, voice-activated visual impairment solution can read text, scan digital codes, recognize faces of family and friends, identify products and warn of hazards - all communicated to the wearer in real time.
The facial recognition feature can be ‘trained’ or programmed to recognize up to 100 people or things.
It doesn’t give eyesight back to Connor but, his mum says, “It helps him get around better.” It’s still new and Amanda says, “We haven’t quite mastered the thing yet, but when we walk down the street he can know where he is better. He can pick up any book. It can read anything back to him….”
She says, “He’s a very bright kid. He made the transition to Junior High this year. It’s gone really well. There are so many stairs and halls, but he’s done really well. He’s happy.”
After attending VJH’s track and field day recently, Amanda feels good about Connor’s school. “Everybody looks out for him, which is nice.”
Having the OrCam at this time in his life is making a difference and the Whitehorns are grateful to the Lions. “It was a big thing for the Lions to do. It was a big ask and they came through.”