NO SIGHT, NO SOUND
Granton teen and family adapting to new reality as Usher’s Syndrome steals his senses
April Konkol just wants what’s best for her son, Alex Mendieta. She wants him to be independent, to have the chance to go to college, find love and fulfill his dreams. For a person like Alex though, it can be hard. Conversations in a common cafeteria with other teenagers can leave him frustrated and exhausted. A simple jaunt down a school hallway can be dangerous and learning school lessons through audio or visual means is becoming more difficult.
That’s because Alex has Usher’s Syndrome, a genetic disorder that is the most common cause of deafness/ blindness in the human population. A sophomore at the Granton Area School District, Alex has dealt with the reality of his condition heroically throughout his entire life, even though it wasn’t until a few years ago that his family knew exactly what was wrong.
In hindsight, April said there were signs of Usher’s Syndrome from the beginning. Alex didn’t learn how to walk until age three. He had no sense of hearing and he struggled with balance.
“No, we didn’t think it was Usher’s Syndrome, the reason being because of vestibular problems. He didn’t walk until he was three and it was a stumbling walk. I wish I would have gone back and did a genetic study, but the doctors said it wasn’t necessary,” April said. “Nothing else connected at the time, the pieces were never put together.”
More pieces came along as Alex got older. At around age 11, April said he started showing signs of night blindness — the inability to see at night -- which is another sign of Usher’s Syndrome, a sign that his vision was beginning to deteriorate. “I remember a few years back when he was 11, we were watching fireworks on the Fourth of July, and he was running around outside with a bunch of other kids and he ran into a post. He said, ‘I can’t see ‘cause it’s dark out.’ But it was dark out for everybody. Now going back, I think he was starting to show symptoms,” she said. (The doctors) said the biggest thing with vision is that it goes so slowly. You usually don’t notice losing vision until it gets extremely bad.” As the individual symptoms began to get worse for Alex, April said they decided to try a different approach to the problem, contacting a neurologist in the hopes of improving his balance. Instead, they received some bad news. “We took him in at 15 to a neurologist about his balance,” she said. “The neurologist, she recommended that we see a geneticist and they
Alex Mendieta confirmed he had probable Usher’s Syndrome … When we got the diagnosis, I didn’t know what to do, I couldn’t stop crying. I asked them if they would explain it to him on what’s going on. He was so positive.”
Recently though, April said the positivity that has long defined her son’s stand against Usher’s Syndrome has been fading. His vision loss at this point has left him legally blind and only able to see about 10 percent through his peripheral vision. As he has been extremely reliant on his vision in order to interact and talk with others, she said losing it has taken its toll.
“It’s been a real struggle, learning to cope … he now has to scan to be able to see what’s in front of him. It causes a lot of stress,” she said. “Focusing on being able to hear people (with his cochlear implants), it leaves him physically exhausted at school and work. Its like running a marathon but with your eyes and ears. He’s a visual person. Even though he has the implants, he still uses lip reading to be able to talk to people, he still depends on it.”
Ever since they learned that Alex has Usher’s Syndrome, April said the family has been working hard to adapt their home and lives to better meet Alex’s needs.
“He’s having to learn to depend more on mom and little brother getting down the stairs indoors,” she said. “We’ve had to add more railings outside the house and more lighting so he can see. The little ones need to make sure all their things are picked up because he can’t see them. We always try to keep a light on at night in the hallway outside his room so he can find his way better.”
Alex is having to learn to adapt to the changes as well. There have been lessons on how to walk with a white cane and read Braille to prepare for the day that his eyesight is completely gone. April said they have also taken him to an Usher’s Syndrome conference in Philadelphia in the hopes of making connections with others in the same situation Alex is in, and to help Alex learn how to maintain his independence.
“There’s a lot going against him,” she said. “It’s been really difficult for him and us. We still feel that he can be independent and do things.”
One of the big steps the family is hoping to take in securing Alex’s independence is to get him a leader dog that has been trained to meet his needs. To do that, Alex first needs to improve his mobility and undergo training for two weeks with a dog that has been trained for someone with deafness/blindness. If he can reach that point, April said he will have a wonderful companion that will stick with him no matter what.
“We are hoping to get him a leader dog, but he needs more mobility for that,” she said. “There’s a training in Michigan that he will be going to so he can get a dog. Leader Dogs for the Blind is the only foundation in the U.S that has dogs trained for deaf/blind people. All the others it has to be blind or deaf, training a dog for both is tricky. It’s a matter of him being trained well. It will help with companionship, he feels isolated. He has trouble sitting in the cafeteria, the noise is very difficult. He reads lips and he gets frustrated by the sounds of people around him … he’s had to adapt.”
Beyond that, April said her hopes for her son are the exact same hopes any mother has for their child.
“We would like for him to be able to go to college… there’s more modes of transportation for him than in Granton, it’s isolated here and we live in the country. We want him to be as independent as possible,” she said. “We want him to be confident enough to be able to get his own apartment, that he finds someone in a good relationship, what a regular person without a disability has is what I hope he has. It will be harder, but if he puts his mind to it he can have his goals and dreams fulfilled.”
The Granton Student Council is holding a Miracles for Mendieta fundraiser for Alex and his family at the Granton High School on Feb. 8. The event will begin at 4 p.m. with a dinner of garden salad, two types of pasta, three types of sauce, lemonade, coffee, milk and an assortment of desserts that will be prepared and donated by members of the Granton High School staff. There will also be a raffle, silent auction items and a family friendly movie that will begin at 7:15 p.m. Free-will donations will be accepted at the event and all the funds raised will go toward Alex and his family to pay for medical bills, trip expenses and adaptive technology needs for Alex. For more information, contact Mrs. Chamberlin at [email protected] k12.wi.us or at 715-238-7175.