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Clear Spring High School senior coping with stomach paralysis

Ciara Ortiz says, 'But I know there are people out there who have it worse than me'

February 25, 2011|By KATE S. ALEXANDER | kate.alexander@herald-mail.com
  • Ciara Ortiz, center, of Clear Spring is shown at home with her friends Ryan Cooper, right, and Angelina Stella, left. Not pictured is friend Morgan McIntire.
By Joe Crocetta, Staff Photographer

For months, 17-year-old Ciara Ortiz had no idea what was wrong.

When she ate, her abdomen would be gripped with pain.

Eventually, she traded the familiar feeling of hunger for inexplicable agony.

Pain began to take over the Clear Spring High School senior's life. Soon, she was too sick to participate in cheerleading or even go to school.

"I was watching my daughter deteriorate in front of my eyes," said her mother, Tara Ortiz.

Concerned for her daughter's health, Ortiz took Ciara to Meritus Medical Center and eventually to John's Hopkins Hospital in Baltimore, Md., where an endoscopy — a procedure that looks at the inside of an organ — revealed that Ciara's stomach was paralyzed, she said.

"Food had built up in her stomach for weeks," Tara Ortiz said. "She wasn't digesting anything."

The doctors told Ciara she likely has a condition called gastroparesis, which occurs when muscles of the stomach and the intestines do not work normally, Ortiz said.

What caused her digestion to stop still remains a mystery, Ciara said.

Since September, Ciara has been waiting for a rare test that should help her doctor at Children's National Medical Center in Washington, D.C., where her care was transferred, determine why she lost motility, Ortiz said.

Unfortunately, because the nearest machine that can perform the test is in Ohio with a six-month wait, Children's National Medical Center sent for a machine from overseas, which has yet to arrive, she said.

Ortiz said the test they are waiting for will be expensive, so the family has started making sacrifices, like selling their van, to pay the medical bills.

To help the family, St. Paul's Reformed Church in Clear Spring has organized a spaghetti dinner to raise money for Ciara's treatment, said Donna Mongan, chairwoman of the missions committee.

Mongan, whose daughter, Tonia Murphy, is friends with Tara Ortiz, planned the dinner after learning of Ciara's situation.

Sadly, most food has lost its appeal for Ciara. She has a thin feeding tube that runs through her nose, down into her stomach. The food she has to eat through the tube, a liquid called Nutren, is far from appetizing, Ciara said.

"It's gross, disgusting, I hate it," she said. "It's like bitter baby formula or the milk you feed to kittens."

But for now, it's about the only thing nourishing her body, which has thinned to 93 pounds, her mother said.

Unable to stand by while their best friend battled for her life, Morgan McIntire, 19, Angelina Stella, 20, and Ryan Cooper, 18, have practically moved in with the Ortiz family to help Ciara stay positive and make sure her life is as normal as possible.

"At times, we cry with her, but most times we try to get her up, get her spirits up," said McIntire, 19. "We are like (siblings), we are inseparable."

"I want to be here for her," Cooper said. "I definitely would take her place if I could. I hate seeing her go through this."

Ciara has faced the reality that there is no cure for her, only accommodations, like a pacemaker in her stomach or a permanent feeding tube, but she has not given up, Ortiz said.

"As a mom, I cry every night; everything has been taken from her," Ortiz said.

"But I know there are people out there who have it worse than me," Ciara said.

Ciara said that without the support of friends like McIntire, Stella and Cooper, she and her mom would not be nearly as strong as they are today.

"It's overwhelming," Ortiz said of the support her daughter has received from the community and her friends. "To know how much everyone cares, it's so nice. Thank you."

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If you go:

What:
All-you-can-eat spaghetti dinner to benefit Ciara Ortiz

When: Today, Feb. 26, from noon to 7 p.m.

Where: St. Paul's Reformed Church, 14106 National Pike, Clear Spring

Info: Dinner is $7 for adults 13 and older; $5 for children ages 5-12; and children 4 and younger eat free. There will be raffle of donations from local businesses. Handicap-accessible seating will be available. Carryout will also be available.

Menu: Spaghetti with meat and plain sauces, salad, roll, applesauce, drinks and dessert.

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