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.
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.
