News Poll
 
Are public employee retirement benefits endangering the long-term fiscal health of the city of Gilroy?
Yes
No
Past Polls
   Top News
 
   Opinion
 

 Developer appreciates the kind words on Uvas Creek protection
Feb 8, 2010
 
 Open the government doors; water district's threat
Feb 8, 2010
 
  More Opinion...
   

NEWS > COMMUNITY


Smiling at the 'worst' odds
Apr 16, 2009
 By Jodi Engle

Caley Camarillo, 7, shares a quiet moment with her mother, Teresa Camarillo, and relaxes with her Nintendo DS, her comfort blanket and her stuffed bunny before she gets ready for surgery in the intake area of the Lucile Packard Children's Hospital surgery center Tuesday afternoon. Caley has been diagnosed with cystic fibrosis, which is a fatal, chronic disease affecting the respiratory system and digestive tract.

For more photos of Caley and her family, visit our photo gallery.

Photo by: Lora Schraft, Staff Photographer
Caley smiles at her parents, who sit across the waiting room, as staff nurse Marilyn Lopez listens to her heartbeat before she heads into surgery Tuesday.
Photo by: Lora Schraft, Staff Photographer
At home Wednesday after the surgery, Caley helps her mom iron on a photo of herself on T-shirts that the family and friends will wear Saturday during a fundraiser for the Cystic Fibrosis Foundation at Gilroy Gardens.
Photo by: Lora Schraft, Staff Photographer
Martin Camarillo gives his daughter, Caley, a kiss before she heads into surgery Tuesday.
Photo by: Lora Schraft, Staff Photographer
Margy Mayfield, a registered nurse and co-founder and administrator of Coastal Kids Home Care, flushes out Caley's new portable catheter with saline solution and heparin at the Camarillo home Wednesday. The solution helps keep the catheter - which connects to a blood vessel and eases delivery of medication - free of blood clots.
Photo by: Lora Schraft, Staff Photographer
Medicines that Caley takes throughout the day are spread on the counter at the Camarillo home Wednesday.
Photo by: Lora Schraft, Staff Photographer
This Saturday's Great Strides walk is supposed to be a day of hope for people living with cystic fibrosis and their families that a cure for the disease will soon be discovered. But for the Camarillo family, worries are building that a cure might not be found in time to save their 7-year-old daughter, whose condition has been worsening in the past few months.

Caley Camarillo, who was diagnosed with cystic fibrosis as an infant, was hospitalized for two weeks in January and again in March.

"She was very ill this last time. She hadn't needed oxygen since she was 6 weeks old," her mother, Teresa Camarillo, said. "It was another step in the progression of her disease."

Doctors also recently discovered that Caley has cystic fibrosis-related diabetes, and on Tuesday, she had an outpatient procedure to surgically place a Mediport in her tiny chest to deliver medications directly into her bloodstream.

"A lot of this is new to us," Teresa said. "We have been dealing with cystic fibrosis for seven years now. It never gets any easier. We're just hitting new boundaries. We're just getting a step closer to needing a lung transplant. We were told two years ago that she was going to need one in three to five years."

The family has had to wait for a second CT scan to show the disease's progression, because scans are scheduled once every two years to keep Caley's exposure to radiation low.

Cystic fibrosis is a fatal, chronic disease affecting the respiratory system and digestive tract, in which thick, sticky mucus creates a buildup in the lungs that makes it hard for Caley to breathe.

"Caley was passed two sets of the severe gene," Teresa said. "Caley has the worst odds. Everything is coming a lot earlier than it should. She was diagnosed so early on, and we've been able to give her everything she needs, but it's not holding everything off."

Managing the illness involves a series of daily breathing treatments, along with 13 oral medications, four vapor medications and more than 40 pills a day. She needs to be hospitalized three to four times a year for antibiotics to be administered for roughly 10 to 12 days, and the family finishes giving them to Caley at home.

"I have the training to do them at home," Teresa Camarillo said. "The at-home nurse will do dressing changes. When Caley is really ill, she is in the hospital."

With the date bearing down on them for the Gilroy Great Strides fundraiser, the Camarillos needed help. Teresa and her husband, Martin, volunteered to be the event co-chairs last fall when their daughter was in fairly good health. However, Caley's turn for the worse left them too busy taking care of their sick daughter to find the time to raise the goal of $3,000 that they had set for themselves.

That's when Maureen Pramanik, the mother of one of Caley's classmates at Luigi Aprea Elementary School, held a PartyLite Party at her home and donated 25 percent of the sales of the candles and accessories to the Cystic Fibrosis Foundation. Pramanik also collected auction items from Gilroy businesses and auctioned them off at the party.

"In a week and a half, we put together a whole bunch of auction items. We raised close to $3,000," she said. "Companies are having hard times, yet most of them rallied around and donated something even in these hard economic times."

But it wasn't the first time the Gilroy community has came to the rescue of Teresa, Martin and their three children - Caley has a brother, Martin Jr., 11, and a sister, Carley, 5. This past Christmas, members of the San Martin Lions Club heard the Camarillos could use some help and responded by providing financial assistance and gifts for the family. Previously, the Lions Club helped send the Camarillos to Disneyland in 2006.

"They're just one of those families that does everything right," said Don van Straaten, past president and treasurer for the club. "The parents' primary concern is taking care of their kids. They've just had such bad luck in the past few years. It's just a matter of helping them get through that."

The Lions Club often helps families pay for funeral expenses, Thanksgiving dinners and Christmas presents. They decided to help Caley after reading a series of articles about the child in The Gilroy Dispatch.

"You can't help but look in her face and not want to help," van Straaten said.

The Lions Club also donated $1,000 to this year's Gilroy Great Strides. The fundraiser for the Cystic Fibrosis Foundation will be held at Gilroy Gardens Family Theme Park Saturday. Fourteen teams of more than 150 walkers are expected to gather in the morning to walk around the park before it opens to the public. This year's fundraising goal is $25,000, all of which will go toward cystic fibrosis research.

"Right now, because of the economy, donations are down," said Sue Emmert, special events manager for the Cystic Fibrosis Foundation. "It's a very crucial time for cystic fibrosis. Right now there is more science than money. The cure could be out there in a test tube, but we don't have the funds to buy it. We're doing everything we can to get the money to the pharmaceutical companies so we can get that cure."

For Caley, as her cystic fibrosis worsens, it's expected that the hospital stays will become more frequent and Caley will start missing more school.

"I just got her report card today," Teresa said. "She has missed more days than she has attended. One of the things her teachers always say is that, 'Whether Caley is here or not, she is still on top of her game.'"

Caley was absent from her first-grade class 23 days last quarter and in class 19 days.

"She has not fallen behind," Teresa said. "She is in one word 'amazing.' She has such a livelihood. She wants to conquer all things in life. If it were up to Caley, she'd be the next Hannah Montana."

For more information on the Gilroy Great Strides, call 723-3525 or visit http://greatstrides.cff.org.


Jodi Engle
Reach Jodi Engle at editor@garlic.com

POST A COMMENT

If you are under 13 years of age you may read this message board, but you may not participate. Here are the full legal terms you agree to by using this comment form.

blog comments powered by Disqus

Add to Google Add to My Yahoo!  Email This Article  Print
 News: Community
Science Alive
Feb 8, 2010
 
Local Toyota dealership hustles recall fixes
Feb 5, 2010
 
Updated: Death 'couldn't be' alcohol poisoning
Feb 4, 2010
 
Lending a hand
Feb 4, 2010
 
 News: Santa Clara County
South County diluted on water board?
Feb 8, 2010
 
Water district: Protest or hydrate
Feb 1, 2010
 
County strengthens social host ordinance
Jan 26, 2010
 
County board of supervisors to begin webcasting meetings
Jan 22, 2010
 
 News: National and World
Why Tebow and not gay dating ad? CBS on Super Bowl hot seat
Feb 4, 2010
 
Marijuana in the classroom? Sometimes it's legal
Jan 28, 2010
 
Calif. awarded $2.25b for high-speed rail
Jan 28, 2010
 
Apple unveils $499 iPad
Jan 27, 2010
 
More Community... More Santa Clara County... More National and World...


 Obituaries

 Norma Lee (Coutz) Sanchez
6/1/1934 - 9/3/2009

 Margaret Julia Radtke
8/21/1922 - 12/9/2009

 Anthony James Leimas
6/4/1915 - 2/5/2010

 Richard Raymond Corona
12/13/1950 - 2/6/2010

 Johnnie Glen Wright Sr.
2/9/1934 - 1/28/2010

 Mildred Ruth Hanna
12/29/1913 - 1/17/2010

 Richard G. Rodriquez
6/16/1947 - 1/27/2010

 Richard G. Rodriquez
6/16/1947 - 1/27/2010

 Manuel F. Nunes
10/27/1925 - 1/26/2010

 Photos
News
     
Sports
     
Special Events
     
Full Pages
     
 Videos
Honoring a living local legend
Feb 2, 2010
 
Karen Riso: Volunteer of the Year
Feb 2, 2010
 
Blossom Valley Foods: Small Business of the Year
Jan 29, 2010
 
South Valley on lock-down
Jan 28, 2010
 
 GilroyTV
 Most Wanted
 
More Obituaries... More Photos... More Videos...
Advertise | Contact Us | Subscriber Center | RSS Feed
Copyright © 2010 | MainStreet Media Group | All rights reserved.