Blind teen aims high

Di­ag­nosed with an in­cur­able eye dis­ease, 14-year-old senses op­por­tu­ni­ties in­stead of ob­sta­cles.

The Star Malaysia - Star2 - - Living - By MARC RAMIREZ

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

Zach lis­tens to his in­struc­tor dur­ing a cello les­son. — TNS

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