Blind teen aims high
Diagnosed with an incurable eye disease, 14-year-old senses opportunities instead of obstacles.
THE students packed the auditorium, diplomas in hand, the newest eighth-grade graduates of Mary Immaculate Catholic School in Dallas, Texas. Over cake, they and their families marked the transition from one life stage to another while revelling in memories of the past, played out on a screen high above the crowd.
As the slideshow began, Zach Thibodeaux, 14, relinquished a stack of papers to his stepfather so he could focus on holding a cup of punch and a white cane. The graduates howled and giggled as the photos traced their lives from infancy to childhood to adolescence, but Zach could see none of this.
“There you are when you were little,” his mother, Johanna Uek, told him as one photo appeared.
Six years ago, Zach was diagnosed with cone-rod dystrophy, an incurable eye disease that would gradually kill his retinas. With her son’s vision rapidly vanishing, Uek had two priorities – to help Zach prepare for a life of blindness and to offer him visual experiences he wouldn’t be able to enjoy once his sight was gone.
As Zach’s new journey began, he learned Braille, abacus and how to use a cane, in addition to his grade-school studies. Armed with new tools and technologies and aided by supportive teachers and classmates, he lifted the grades that had fallen with his failing vision.
But there were disappointments, too, like having to give up soccer, and tough questions posed by his vanishing window to the world. “Why me? Why is this happening?” Five years later, his voice an octave lower, Zach is headed to the unfamiliar physical setting of high school – upbeat, thoughtful and confident, a kid into Tchaikovsky, fitness and political thrillers. “He’s gone and grown up on us,” said Beth Jeffrey, his former Braille teacher.
Graduation, Zach said, “kind of came by pretty fast. I’m really excited.”
Earlier this year, Zach joined his fellow eighth-graders as they hiked Enchanted Rock, the 130m-high granite dome outside Fredericksburg. It was a symbol of how far his journey had taken him.
It was around first grade that his sight started to go, like black splotches of paint cast on a window. A series of doctors offered glasses, but no remedy. Zach started running into things, tripping, swinging the bat at baseballs already gone by.
When he began lowering his face to the table while doing homework, Uek called Zach’s paediatrician. “Something’s not right,” she told the doctor, who referred Zach to a neurologist.
After two years without any answers, the Retina Foundation of the Southwest diagnosed Zach with cone-rod dystrophy, a degenerative disease inhibiting his eyes’ ability to absorb the waste produced by their electrochemical reaction to light. The toxicity was destroying his retinas.
For Zach, barely in third grade, life had irreversibly changed.
“It takes a lot of skill to be a good blind person,” Stephanie Fleming, Zach’s optometrist, said then. “Crossing streets, getting from the parking lot into the grocery store, knowing how to tell the difference with money so you get the correct change. You have to be well-educated so you end up with a good job and insurance. All these things have to be considered.”
But the diagnosis, while devastating for his family, was in some ways a relief to Zach. A voracious learner, he finally got the tools to redeem his ailing grades. He learned the Braille alphabet in a month.
There were frustrations, too, like being unable to share in sights that amused his friends or his family’s view of a mountaintop sunrise in Hawaii. At Mary Immaculate, teachers went out of their way to adjust lessons or devise alternate assignments, preparing tests ahead of time so they could be translated into Braille and keeping expectations high.
The effort paid off for Zach, who since fourth grade has envisioned a science career and faced challenges with a good attitude. He won speech tournaments and received national academic honours.
“He hasn’t let anything get in his way,” said Linda Coffin, Mary Immaculate’s assistant principal. “He just embraced everything, and the students have as well. It was a learning curve for them, too. When you’re 10, it’s hard to realise what you’re doing and you might get tired of it, like, ‘Why do we have to help Zach all the time?’ But here we are in eighth grade, and Zach is climbing this huge rock with us.”
Before the diplomas were given out, students were recognised for their activities – band, swimming, student council.
Then came the awards – and Zach’s name was called repeatedly, an honour student tied for the class’s second-highest GPA and a decorated thespian with certificates of excellence for writing, technology and school service.
The biggest were yet to come: Zach won the school’s perseverance award and, from Bishop Dunne High, where he’ll start in August, its presidential scholarship for academic promise and leadership. The honours and awards were so numerous that Zach had to hand them off to his stepdad, Joey Uek, at the reception that followed.
“We’re so proud of you, honey,” his mum said. “You made it. You were top three. That was your goal.”
Zach is looking forward to the challenge of new surroundings and relationships. He’ll ride the bus regularly for the first time and be able to join clubs and pursue his interests.
“I like biology, astrophysics, foreign policy. And I’m really into genetics,” he said.
Intent on joining Bishop Dunne’s orchestra, Zach, a fan of the cello’s low sound, has already started lessons.
He knows how much he’s indebted to his family, teachers and friends. He’s learned that it’s OK to ask for help. – The Dallas Morning News/Tribune News Service