BY MARINA GAYTAN mgaytan@losbanosenterprise.comJanuary 21, 2014
CHOWCHILLA — Alison Garibay likes to listen to music, hang out with friends and ride her four-wheeler on the weekends. In other words, she’s an average 14-year-old.
Despite her youth, Alison is facing the greatest challenge of her life. She suffers from a rare condition that leaves her breathless after just a few activities.
She’s currently on a list for a heart transplant at Lucile Packard Children’s Hospital in Palo Alto to correct that condition. “The phone call can come to me or her father at any time,” said Sabrina Garibay, Alison’s mother.
A fundraiser will be held Feb. 8 to raise money for Alison’s family for when that call arrives.
Alison was born with a single-chamber heart, along with other internal anomalies. “We have four chambers,” Sabrina explained, “and she was born with a single chamber. So the walls that separate the chambers in the heart, the atriums and the ventricles, didn’t develop. She just has one big open heart with a single valve in the middle.”
She attends an alternative educational school in Chowchilla, and will remain there until she can return to regular school sometime after the transplant.
Since Alison was just a few days old, her mother knew something wasn’t right. At three weeks she had surgery on her abdomen to correct her small intestine.
“She had two major open-heart surgeries that were nine months apart from each other before she turned four years old, which was a roller coaster of emotions for our family,” Sabrina said. “Besides all of that, she was doing absolutely amazing.”
The family said she was growing normal and was even one of the bigger kids in her class. “She hit all her markers,” Sabrina said. “She was able to attend school regularly.”
When third grade hit, Alison started to develop severe stomach pains. The family went through eight months with doctors trying to figure out what was wrong. It turned out she had gallstones and her gallbladder was removed.
“By fourth grade she developed a cough, low energy and low breathing,” Garibay said. “There was no way to explain except for (it being) asthma or allergies.”
Alison went on a Make-A-Wish trip to Walt Disney World in 2009 and got extremely sick. “She got admitted and that was the start of learning and figuring out what she had,” Sabrina said.
The doctors at the time still weren’t sure what was happening to Alison until she was finally diagnosed with plastic bronchitis in January of 2010. Sabrina said because of a prior heart surgery, a rare side effect had occurred, according to doctors.
Back in 2011, cardiologists had told the family that the only treatment for the plastic bronchitis was a transplant.
Finally, the family heard in April of 2013 she was eligible to receive her new heart. “The actual words to her were: ‘We have decided you have suffered long enough, it’s time for you to get better,’ ” Sabrina said doctors told them.
After another round of testing and blood work, Alison got the official word in July that she was being put on an official list for a transplant. “We were in Rite-Aid when the heart team called to notify us that she had just been added to the list,” Sabrina said. “A weight has been lifted, the hope and the promise of what it could give back to her.”
Alison’s heterotaxy syndrome, where the major visceral organs are distributed abnormally within the chest and abdomen, adds another degree of complication.
Doctors told the family it would take six months or more to be called. Alison is considered a “Status 2” patient, which means she can stay at home while she waits for the transplant. There is an 89 percent chance survival rate, Garibay said. The hope with the transplant is that Alison can be cured from the plastic bronchitis and have her quality of life back, the family said.
After five different heart surgeries, four stomach surgeries and yearly testing, Alison has zipper scars on her chest, a daily reminder of what she has been through. The family is selling zipper bracelets, a symbol of those scars, to help raise money for when the transplant takes place. These bracelets will also be for sale at the fundraiser.
The “All in for Alison Zumbathon & Boutique” will be held 9 a.m. to 1 p.m. Feb. 8 at Ava Fitness Spa, 1505 N. Robertson Blvd. Instructor Susie Sheppard will be heading the Zumbathon.
The Garibay family said they’re thankful for the fundraiser event, adding the money will help pay for travel costs and additional expenses, because Garibay’s husband will be taking six months off from work, all while still trying to raise a family of five.
Diane Sullivan, owner of Ava Fitness Spa, said offering support to the Garibay family is something she wanted to do. And because February is heart awareness month, it was perfect timing for the event. “What better way to support someone in our own community?” Sullivan said. “The family really needs the help.”
The boutique will be open for people to shop during the Zumbathon. It will offer items for sale by local vendors, including clothing, crafts, furniture, jewelry, purses and food. “There will be quite a variety,” Sullivan said. A raffle prize drawing will be held during the event as well. Sullivan said vendors have donated items to be raffled off. All the money being raised will go to the Garibay family.
The Garibays said that although Alison will still fight a battle for the rest of her life, she plans to move forward with the love and appreciation that life brings.
“Life still goes on,” Alison said. “I definitely want to do good in school because I want to be a cardiologist.” she said. “I want to go to Stanford. I love Palo Alto; it’s one of my favorite places in the world.”
Entry to the Zumbathon is $20. For more information on the event or for donation information, call (559) 665-3828.
Read more here: http://www.mercedsunstar.com/2014/01/21/3452764/chowchilla-student-set-for-heart.html#storylink=cpy
via CHOWCHILLA: Chowchilla student set for heart transplant; fundraiser being held | Chowchilla | Merced Sun-Star.
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