Blind Faith

Luke and Rachel Watson have lost most of their sight. They eventually will lose all motor skills. Their parents are losing sleep -- do the adults tell their kids they're dying of Batten disease?

Melinda Watson is only in her mid-thirties, but she has already experienced one moment of absolute bliss. It came after the birth of her second child: Sixteen months after delivering her son, Luke, in 1993, Melinda cradled her newborn daughter, Rachel. She sensed a sort of completion. "There was a 15-minute time I was alone with my new baby that was perfection," she recently reflected. "I felt secure in the fact that…we were the perfect family."

By all appearances, Melinda and Sam Watson and their children were the perfect family. The deeply religious college sweethearts married following their graduations from Texas A&M in 1989. Eight years later both were pursuing fulfilling careers, Sam as an environmental enforcement officer with the U.S. Army Corps of Engineers and Melinda as a special-education teacher. Luke and Rachel were the perfect complements: Both were handsome with dark hair and fair complexions. Both had already developed interests: Luke loved sports, both playing them and watching. Rachel was an avid drawer; she could spend hours with a box of Crayons.

But in the blink of an eye, Melinda Watson's perfect vision of her family went badly out of focus. In October 1997 a school nurse informed the Watsons that Luke had difficulty distinguishing between colors, and suggested he have a professional eye exam. An optometrist fitted Luke with prescription glasses, but his vision problems persisted. More extensive examinations revealed a serious condition: Luke wasn't simply color-blind, nor was he just going blind. Luke was dying of a little-known genetic illness most commonly called Batten disease, an especially cruel disease that most often strikes children and leads to the eventual degeneration of the brain. After blindness, the victims of Batten suffer a progressive loss of motor skills. By the time they reach their teens, these kids are bedridden invalids waiting for death. Sometimes they linger until they are 20 or 30 years old. There is no known cure.

Luke and Rachel strive to maintain a normal life.
Deron Neblett
Luke and Rachel strive to maintain a normal life.

The Little Prince author Antoine de Saint-Exupéry once said that "perfection is achieved not when there is nothing more to add, but when there is nothing left to take away." The Watsons had more to lose, and it came right quickly: Seven-year-old Rachel was also diagnosed with Batten. She and Luke will die right before their parents' eyes.

"I didn't think God could be so cruel," says Melinda. "But I know he has a reason. I just don't know what it is."

Neither does Luke or Rachel. They don't even know they're dying.

A mischievous-looking redhead, Melinda Watson breaks into one of her increasingly infrequent smiles when she recalls how she and her husband, Sam, got together. It may not have been love at first sight, she says, but it was close.

In 1985 Sam and Melinda were both 18-year-old freshmen living in dormitories at Texas A&M. Each fall at the tradition-laden university, residents of the various boys' and girls' dorms are paired to be so-called Bonfire buddies for the mother of all pep rallies prior to the school's annual Thanksgiving weekend gridiron battle with the University of Texas. The students swap gifts with their assigned partners throughout the fall semester leading up to the big game. During that time the identity of the Bonfire buddy is supposed to remain a secret, but Sam and Melinda discovered they were each other's partners and started going out right away. Although they didn't date each other exclusively, Melinda felt that special spark.

"I went home for the Christmas holidays," says Melinda, "and while I was home, he was all I thought about."

A native of Longview, Melinda and a younger brother grew up in the East Texas town of Lufkin in a seemingly stable family environment. The family roles were traditional and well defined. Their mom stayed at home while their dad made a living at the Schlitz brewery. Melinda's black-and-white world became a little grayer when, without warning, her parents divorced just before her college graduation. Shortly thereafter, she and Sam broke up for a summer. But she eventually returned to Sam's "quiet strength," a quality she believes she counterbalances by being a little wilder than her husband.

Sam Watson is indeed a soft-spoken, thoughtful and somewhat shy man; he ponders his words before he speaks. Sam grew up in Houston as the youngest of eight children. His mother is a former nurse, his dad a retired oil industry attorney. He is a medium-sized man with a full head of brown hair and friendly eyes. "He's very grounded and has a real strong faith," says Melinda. "I think I was very attracted to that."

Following their marriage on New Year's Eve, 1989, Sam and Melinda moved to Conroe and from there they commuted to work each day: Sam to La Porte where he worked for a small biological company, and Melinda to a school in Kingwood where she taught special education.

After Sam landed a job with the Corps of Engineers in Galveston, the couple relocated to Humble. Then it was back to College Station while Sam finished his master's degree. After graduate school, Sam opened his own bioengineering company. When Sam's firm merged with another, the couple moved to the upper-middle-class subdivision of Copperfield in northwest Harris County where the pine trees reminded Melinda of East Texas. Problems within the company led to Sam's return to the Corps of Engineers and a four-times-a-week commute to Galveston. Melinda began teaching special ed in the Cy-Fair Independent School District; it's a field that first caught her attention as a freshman at A&M where she volunteered with the Special Olympics.

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