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Despite deadly disease, father finds love

By ERICA RODRIGUEZ
March 5, 2011 at 10:03 p.m.
Updated March 4, 2011 at 9:05 p.m.

Alisa Villarreal feeds her boyfriend, Craig Fox, a chicken nugget during their lunch at Chick-fil-A with Fox's children. Since being diagnosed with ALS in 2008, Fox has lost the use of his arms and legs and relies on the help of his children and his new girlfriend for most daily functions.

ALS facts ALS is a motor neuron disorder that affects nerve cells in the brain and the spinal cord

Symptoms include weakness, wasting, and paralysis in the muscles of the limbs and trunk, as well as loss of control functions such as speech, swallowing and, eventually, breathing

Only about 30,000 people in the country have the disease, and there is no known cure.

In a population of 100,000 people, about five to six will be living with ALS

People with ALS are often given three to five years to live, but can sometimes progress to death in a few months after a diagnosis.

Source the ALS Association

Winning a lottery The chances of Fox developing amyotrophic lateral sclerosis were about the same as winning the lottery: Fewer than 6 people in 100,000 will get the motor neuron disease.

In Victoria, about five people are known to have it. The disease slowly eats away at motor neurons that send signals to muscles. When the neurons die, the muscles they once controlled do, too.

It's a complicated illness with no cure.

"We don't know the exact cause of ALS at the molecular level yet," said Steven Perrin, president and CEO of the ALS-Therapy Development Institute.

His group tested 220 different drugs in the past 10 years, but the market for drugs to even calm ALS symptoms is barren. Only one FDA approved drug on the market, riuzole, slows the disease. Perrin believes three drugs, which are still being tested, could reach patients in the next five years.

"We're seeing a lot of progression in the ALS space, but it's never fast enough for patients," he said.

  • Erica Rodriguez

Relationships with disabled can be fulfillingThe concept of loving someone with a terminal illness is simple, an expert says.

Despite the physical disabilities, if two people have maturity, trust and respect for each other, they can have a relationship healthier than either of their bodies, said Laurel Graham, a licensed professional counselor who works with the Crossroads ALS support group.

"It's profoundly mutual," she said, and the ill person is able to give back on a level that most people wouldn't assume.

"It's connecting with someone so deep at a level one cannot imagine unless they get into it," she said.

Sherry Podolak married her husband after he had complications from a form of muscular dystrophy.

"Some people would say they would never get involved in something like that, and some people say to follow their heart," Podolak said.

He died in 2008, less than three years after their marriage.

"I went in with my eyes open," she said.

Her advice for people in the same situation is simple: Surround yourself with all the support you can get.

"You just can't do it alone," she said.

Graham also suggested people join a support group dedicated to the illness.

"You develop a network of support people who you can just call and let your hair down to," she said.

People can learn from the shared knowledge and can learn to cope.

She also encouraged people to continue living without allowing the disease to limit them.

"Live life as fully as possible," she said. "Which actually is what each of us need to be doing every day. Don't wait until there's a diagnosis of a potentially terminal illness to live your life."

  • Erica Rodriguez

A smiling woman with warm-colored skin and soft eyes, Alisa Villarreal tucks her 300-pound boyfriend into the family GMC Terrain vehicle.

Her hair is whisked backward, exposing tufts of gray against onyx black. Her lipsticked mouth crinkles pleasantly as she clicks a seat belt over his 5-foot-10-inch frame.

Moving 42-year-old Craig Fox anywhere creates chaos. His head leans down, his shoulders droop and his arms are squishy dead weight. Villarreal squeezes his body in place and folds his arms.

Villarreal doesn't shy away from the chaos. Rather, she is a willing participant, choosing to date a man with a terminal disease.

Once Fox is in place, Villarreal hops in the back seat, smiling and giggling as Fox's 16-year-old son, Tanner, drives the two on their date.

When the three get to Chick-fil-A, a new challenge begins: getting him in the door.

She and Tanner jiggle and jam Fox's collapsible wheelchair until it opens with a yank. They wrestle with clamming extra parts. A peg stuck in a wrong slot or a loose footrest risks roughhousing Fox's disabled body to the pavement.

"What am I doing wrong?" Villarreal says, looking to Tanner.

"Well, imagine you're on 'Jeopardy,' and you have to do it as fast as you can," Tanner says, holding the chair handles.

Fox sits in the passenger seat quietly with a plastic neck brace. He wears it when he's being driven to keep his head on straight.

The scene is hardly romantic, but Fox's mysterious neurological disease keeps him savoring every frustrating moment with his two children, Bailey, 12, and Tanner, and the latest addition to their family, Villarreal.

Fox, a widower, was an outdoorsman, Victoria High School Stingarees kicker and lover of big trucks before he learned about a genetic mutation that will eventually kill him.

Deep inside his DNA, a strange gene expression led to the disease that has drained his arms, neck muscles and walking ability. Almost three years ago - at a doctor's visit to Houston - he learned he had a motor neuron disease called amyotrophic lateral sclerosis and was given three to five years to live.

Fox and Villarreal never knew each other before the disease.

Villarreal, a 41-year-old career woman, works 50-hour weeks drafting and organizing events for Testengeer Inc., an engineering company in Port Lavaca. Among her peers, she's an omnipresent force, directing and overseeing things in a field dominated by men. Never married, she lives with her parents and is childless.

The two met through mutual work friends last summer, but never envisioned a serious relationship.

Romance was off limits. Villarreal had seen the hurt, the complaining and pain in married couples her age. She wanted nothing of it.

Their contact began as friends chatting on the phone occasionally and trips to the movies together. The two didn't become a couple in one defining moment, but the movie dates and long talks slowly morphed into affection.

"I was attracted to her because she was doing things for me that others might have hesitated to do," Fox said.

The weekend trips to see the Houston Astros and Texans brought them closer. The two share their frustrations, and Fox offered comfort and prayer.

"I call him and just tell him what's going on, and I feel like the world is lifted off my shoulders," she said. "He's my serenity sometimes."

His words empower her to accept her own shortcomings, judgments and faults.

"He makes me happy," she said. "We have fun together, we laugh, we cry and we talk. It's just a normal relationship, except for the fact that he has this ailment and he needs help, and I help him."

Slowly, the motivated, organized woman, who never wanted commitment, fell recklessly in love. The two got serious about their label in November.

"I'm going to go this direction with my physical body, but are you willing to accept that and climb on the boat and ride this with me?" Fox said, recalling the conversation. "We can have some awesome times."

The two cried and thought about what a future with ALS could be like.

"It could hurt," Villarreal said. "But look at all the things he's brought to my life. It's unforgettable the things that we've done or the point that we've come to. It's almost unbelievable."

Romance comes disguised in the little things like when Villarreal trims his nails, cleans his nose or combs his hair.

Intimacy comes with accommodations.

Villarreal massages her hands into his limp fingers while they're at the movies. She'll lift his arms and wrap them around her to imitate a hug.

"With this, it's a little bit reckless," Villarreal said. "It's little bit out of my control. It's made me realize you can't have everything your way all the time, so just let this happen how it's going to happen and let it be whatever it's going to be and let it bloom and accept it."

Fox's disease is progressing rapidly, and he keeps losing weight. For the first time in his life, he's eating three high-calorie meals daily to stop the rapid loss.

"It seems like every day something new occurs or something new pops up, and it's progressing very fast, and it's scary," Villarreal said. "I don't think about what's to come, I just kind of deal with it. It's kind of like dodging bullets."

But in the face of death, the two have learned to relate to life differently.

"We both knew what the finish line is," Fox said. "But unconditional love, that's powerful. We're living in the now."

The two laugh as Villarreal tucks a napkin into Fox's shirt, dips a waffle fry in a sauce and feeds him. A few customers stare or look twice, but the Foxes or Villarreal don't look back.

Tanner, unfazed, bites into one of his three sandwiches.

The romance has made life easier for him and Bailey.

"She gives us a break," Tanner says. "It's awesome. It's really awesome."

Villarreal has become a mediator for Fox and the teenagers, often helping calm family feuds. The three know she doesn't replace Fox's late wife, Nancy, who died of heart failure in 2005. It's a different kind of love.

"All three of us come in a package," Tanner says. "If a woman wants to marry him, she has to help him take care of us. We're part of the deal. It's deal or no deal for us."

Fox and Villarreal don't talk about marriage.

"We're not looking to tomorrow. You don't worry about what happened yesterday, and you're not worried about what's going on next week," Fox says. "You can plan, but you're really not concerned about it, and until you accept that and really dig into that - then that love can actually come out of a person."

After Chick-fil-A, the group heads to get ice cream. Fox waits in the car because the moving was too much.

"Do you like sweet cream?" Villarreal asks, holding his hand. She reaches her chin above his neck brace and kisses his lips goodbye.

"I love you," she says.

"I love you, too."

A Father's Strength: An Ongoing Series

Oct. 2009: As disease cripples father, family provides support, hope

Dec. 2009: Debilitating disease doesn't stop this family's Christmas

Jan. 2010: They come for support, treatment and hope for a cure

March 2010: Daughter races to raise money for father's illness

June 2010: For family living with ALS, Father's Day will be filled with love and hope

Return to "A Father's Strength"

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