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Seeking a miracle: Phoenix parish rallies to assist Catholic teenager
By Claudia I. Provencio, The Catholic Sun
September 20, 2007
At a recent Huntington’s Disease support group, a newcomer’s eyes inevitably wandered to 19-year-old Angelica Contreras sitting quietly in the corner. She sat next to her father, Michael Varela, 38, who couldn’t help but twitch throughout the two-hour meeting.
The two suffer from Huntington’s, a hereditary and degenerative brain disorder that affects a person’s ability to walk, talk and reason and can cause dance-like movements similar to Parkinson’s. An estimated 30,000 people in the United States suffer from the disease, which typically manifests itself in adults between the ages of 30 and 45.
The monthly support group at St. Joseph’s Hospital and Medical Center serves as a therapeutic outlet for both Huntington’s sufferers and their caregivers.
“It feels like it’s my fault. I feel helpless,” said Varela, who never imagined his shaking and aggression were anything more than the result of his drug and alcohol addictions.
When he was first diagnosed with Huntington’s, he “was angry with God and cussed at Him,” as he saw his daughters suffering as well. Both Angelica and her 7-year-old half sister have the disease.
But now he’s trying to find peace. He’s moved into an assisted-living facility that is helping him kick his addictions and he’s joined Angelica and her mother Noreen Contreras at support meetings.
The faces of Huntington’s
In the group of about 30 regulars, Angelica, a petite teenager with blonde highlights in her dark brown hair, is the youngest. For her, Huntington’s means she walks off-balance and needs a walker to do almost anything because she often falls. And in the span of three months, she’s regressed to needing a motorized wheelchair.
But more frustrating than not being able to walk to her bedroom or into church unassisted is her inability to vocalize her thoughts.
“She’s getting very irritated at the fact that she can’t talk as good as she used to,” Noreen said. “I’ll ask her to write it down because I can’t understand her. Before, she would just go and do it and now she’s getting upset.”
Writing things down is a struggle since her hands are starting to shake more often. But soon, she’ll have a DynaVox machine, a small electronic communication device that will allow her to say what she feels, like when she’s struggling to breathe and she can only communicate through her panic-stricken eyes.
“The hardest part of HD and [Juvenile HD] is that your brain knows you want to tell someone something but you can no longer communicate; it knows you’ve just wet your diaper again and can’t move any more or do anything about it,” said Phil Hardt, chief volunteer officer for the Arizona affiliate of the Huntington’s Disease Society of America, who also suffers from the disease.
“It knows what your relatives are saying in the corner of the room about how sick you are, because they think you don’t understand any more; it knows when those who you love no longer come to visit you because you’re ‘not there.’ And it knows these things until the day you die,” added Hardt, who leads the support group.
He likened Huntington’s Disease to going insane and having Alzheimer’s, Parkinson’s and Multiple Sclerosis at the same time.
“You lose your identity,” he said, which means big lifestyle changes for everyone involved.
Because people with Huntington’s are in constant danger of choking or falling, families need to change their routines as they would for the addition of a baby. Food needs to be cut into small pieces, sharp furniture needs to go and the kitchen needs to be stocked with lots of plastic cups and plates; sharp utensils are off limits, too.
Post-it notes are commonly strewn throughout a home, reminding loved ones living with the disorder of their daily tasks: clean your room, eat your lunch, take your medicine.
If Noreen doesn’t set out clothes daily for Angelica, the brown-eyed teenager panics. If she’s faced with more than two choices, Angelica’s mind goes blank and she is unable to dress herself.
While simple decisions like this are a part of everyday life, they are overwhelming choices for anyone living with Huntington’s, for which there is no cure.
And with winter approaching, the cold weather is particularly worrisome since many people battling the disease can contract pneumonia and die.
Moving forward
The Contreras family tries to take it all in stride and seeks refuge in their community at St. Jerome Parish in Phoenix, where Angelica is a Life Teen core member.
Parishioners and the Life Teen program have stepped up to help the family weather the financial setbacks since Noreen quit her job to take care of Angelica full time.
The faith community recently helped find donors to sponsor a trip to Graceland, the home of Angelica’s musical idol, Elvis Presley.
Now, parishioners, led by stay-at-home mom Tracey Andrews, are working to help Noreen get a car big enough to hold Angelica’s motorized wheelchair. They are also selling T-shirts and bumper stickers to help with mounting medical expenses.
“Angelica’s mission is to spread her story to as many people as possible so more people are aware and money can be raised to cure this awful disease,” Andrews wrote in a recent letter to the parish.
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