At first glance, you wouldn’t think anything was wrong with Joel Ramirez. Stay and talk to him and you’ll swear he’s just a normal guy.
Joel, 18, is a college student who likes to play video games, watch football and listen to music.
But stay long enough and you’ll be there to see him wear his vibrating vest, take his 36 pills, do his five 40-minute daily breathing treatments or connect a feeding tube directly to his stomach.
He has cystic fibrosis (CF), a genetic disease in which mucus clogs the lungs, making it difficult to breathe and rendering the body a breeding ground for bacteria and fungi. According to the Cystic Fibrosis Trust, 1 in 25 people have the fault gene leading to CF. If both parents have the gene, there is a 25 percent chance their child will have CF.
“I didn’t know what it was,” Joel’s mother, Marisol, said, “Looking back there were so many signs.”
At the age of 5, Joel was initially treated for severe asthma. After countless appointments and emergency room visits, he was referred to a pulmonologist, where he would soon receive the life-changing diagnosis.
Marisol came to realize how much of a lifelong commitment it would be for Joel and everyone close to him.
“The doctor said that CF is a train coming at your son and all you can do is slow it down,” Marisol said.
According to Very Well Health, the life expectancy for those with CF in the 1980s was around 20 to 25 years. Today, they can expect to live as old as 40 or 50 with proper treatment.
Joel is often forced to check-in to the Loma Linda University Children’s Hospital for two or three weeks at a time for treatment.
While the maximum number of visitors per patient is three, Joel’s room regularly has upwards of 15 people. His nurses and doctors have no choice but to maneuver around the cards and game pieces lying all over the floor just to treat him.
For Joel and his family, this is just everyday life.
“It becomes so normal that you think everybody does it,” Marisol said. “When he was little and would get up for school and do his treatment but you realize that not everybody does that.”
“I would notice it wasn’t normal when other people would get really concerned for Joel,” Joel’s 20-year-old sister Jazmine said. “The worrying look others will give him when he starts coughing is so different. To us, it’s like white noise.”
Considered an orphan disease, CF is so rare that the demand for medicine and research is not in high enough demand. The Cystic Fibrosis Foundation (CFF) does not receive any federal funding, instead relying solely on donations.
Every May, the CFF organizes a 5K walk for families and friends of those afflicted by CF at Cucamonga Guasti Regional Park in Ontario.
“My youngest son, Ryan (13), would say that the walk was the best day ever,” Marisol said.
Joel’s team, Breath4Joel, has the largest turnout at the walk every year, with nearly everyone they know coming out to support, some coming from as far as Mexico.
Joel can never quite escape the constant presence and charity he receives. In addition to raising over $6,000 in 2019, the family also held a yard sale and donated all the proceeds to the CFF. Even then, Joel doesn’t mistake it for anything but love and support.
“I feel like it puts pressure on me to live a good life,” Joel said. “I’m not living a bad life.”
Joel and his family treat everything as a blessing in disguise.
“I feel like if Joel wasn’t diagnosed, we wouldn’t have been as close with all of our extended family,” Jazmine said. “We treat our cousins as if they are our brothers and sisters.”
Joel’s father Freddy noted how they make more of an effort to be together as a family. “We likely wouldn’t have gone on so many family vacations,” Freddy said.
Whether it is an across the country road trip or a flight to Cancún, Mexico, Freddy and Marisol take pride in being able to vacation with their kids. They hope to one day be able to say they’ve been to every single state in the country.
Though the life expectancy is lower for Joel, he still has time to continue to live a good life for others, but most importantly, for himself.
“The doctor reassured us that he’s going to live a long life,” Marisol said. “He’s going to outlive us.”
The Ramirez family uses their time wisely by living in the moment. One day at a time, one vacation at a time, one treatment at a time, and one breath at a time.
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