Teenager fights Huntington’s disease with faith

By Claudia I. Provencio, The Catholic Sun
July 5, 2007

Even though Angelica Contreras is slowly losing control of her body, the 18-year-old is rarely seen without her trademark smile.

Angelica, a St. Jerome parishioner, is living with Juvenile Huntington’s Disease, a hereditary and degenerative brain disorder that will eventually render her unable to walk, talk or reason.

The petite teenager walks with a limp and the assistance of a walker, is nourished by a feeding tube and uses a writing pad to communicate, but her face shines with delight at the mere mention of Elvis Presley.

“She just loves the music,” said her grandmother, Connie Contreras. “My husband Alex sings to her and even dances with her and gets crazy with her. She just smiles — she just loves it.”

On sad days when Angelica doesn’t want to get out of bed, she’s motivated by her devoted family and their efforts to take her to Graceland, the legendary home of her idol, before her ailing body makes it an impossibility.

Angelica’s doctors have given her less than a year to live and she is in constant danger of choking or falling, but her family is holding out hope for a miracle.

Puzzling symptoms

Growing up, the Contreras family recalls Angelica as a hyperactive child who loved to talk.

“She was always jumping around, making me laugh and being happy,” said her mother, Ana Contreras, who also has a 3-year-old daughter. “We look at videos of her and she’s right in the camera saying, “Hi,” jumping around like a little rabbit.

“That’s what’s hard, not watching her be that way anymore and it’s really in the matter of a year and a half that she has completely changed — her physical, her mental, and her emotional state — everything.”

For years, the Contreras didn’t know what was causing these changes.  Angelica had mood swings and uncontrollable outbursts, she didn’t like going to school, she was depressed, and she began to suffer from inexplicable twitches.

They sought medical answers for two years. Then a telephone call in October 2005 provided the answers.

Angelica’s estranged father called to say he was diagnosed with Huntington’s. People with the disease typically experience symptoms between the ages of 30-45, while juveniles carrying the gene can exhibit symptoms as early as age 2.

Looking back she realized he had exhibited symptoms, but Ana Contreras had always attributed his odd behaviors to his addiction to drugs. Immediately after hanging up the phone, she ran to the computer and researched the disease.

“I screamed. I was crying out loud because I put in ‘Huntington’s’ and the first page tells you all the symptoms,” she said. “She was going through every single one of them.… Then when I read it wasn’t curable, that’s when I really started crying.”

By this time, Angelica had been exhibiting stroke-like symptoms. Her left side was weak, her mouth was turning sideways and her speech was becoming slurred. She was tested in November and diagnosed in December that same year.

Later, the teenager who had dreamed of becoming a nurse learned that her 7-year-old half-sister was also battling the disease and in much worse shape.

“I pray for her every day because I am sure it is a lot harder on her as she is so much younger and dealing with this disease,” Angelica wrote on her Web site. “Please keep her in your thoughts and prayers if you don’t mind; it would mean a lot to me.”

To help the Contreras cope, they have begun attending Huntington’s retreats in an effort to meet other families who are grappling with watching a loved one diminish before their eyes.

“It can get a little overwhelming at times. You have your moments because you remember those moments when they were little and how everything was perfect and then all of a sudden, bam,” said Connie Contreras, fighting back tears. “But my faith keeps me going. I’ve just gotta keep the faith.”

Keeping the faith

The St. Jerome community has rallied behind the Contreras family and embraced Angelica’s dream to visit Elvis’ 14-acre estate.

When parishioner Tracey Andrews heard that Ana Contreras was single-handedly trying to raise money for the trip and for mounting medical expenses through bake sales and yard sales, Andrews knew she had to take action.

Angelica was too old for the Make-A-Wish Foundation and too young for similar organizations that grant wishes for adults.

“I just felt a sense of urgency because of the news that they received,” said the stay-at-home mother of two with a background in property management. “I worked on this day and night as soon as my kids went to bed.”

Within weeks Andrews coordinated the creation of a Web site detailing Angelica’s story and the sale of T-shirts saying “A Miracle for Angelica,” the theme of her Web site.

The Web site, www.azmiracle.com, offers information about the debilitating disease, details Angelica’s story and allows visitors to donate to her cause or commit to prayer.

While the family is praying for a miracle, Angelica has prepared her living will. In the event of her death, she wants her organs to be donated and her brain to be available to the Huntington’s Disease Society of America, in the hopes it may one day be closer to finding a cure.

“Watching her get up and face everyday every day gives me strength. She’s the one going through this. I’m just watching,” said Ana Contreras, who recently quit her job to take care of her daughter full-time.

“I have to keep going because she is continuing to go … I know she probably thinks I’m carrying her, but she is carrying me.”