Chandler teen’s cystic fibrosis fight pays off big - SanTan Sun News SanTan Sun News

Chandler teen’s cystic fibrosis fight pays off big

December 15th, 2018 development
Chandler teen’s cystic fibrosis fight pays off big

By JASON STONE, Staff Writer

Vinnie Acedo-Holmquist doesn’t need long to describe one good aspect about living with cystic fibrosis.
“The Six Flags Fast Pass is a big bonus,” the Chandler teenager said with a laugh. “Actually, it’s a lot of amusement parks. They’re accommodating for it.”
It’s certainly one break Acedo-Holmquist, 19, has earned after dealing his whole life with the inherited chronic disease that affects the lungs and digestive system.
Another break is coming in the form of a big financial reward.
Acedo-Holmquist recently earned $25,000 as a recipient of the AbbVie CF Scholarship and was named the 2018 Thriving Undergraduate, based upon his impressive academic and extracurricular achievements as well as public votes.
A 2017 graduate of Chandler High School, Acedo-Holmquist is currently attending Chandler Gilbert Community College and pursuing a degree in Business Administration.
The AbbVie CF Scholarship has been helping families deal with the financial burdens of cystic fibrosis for a quarter century. In its first 25 years, the scholarship program awarded more than $3.2 million in scholarships to more than 1,000 students.
Acedo-Holmquist won an online contest after completing a wide-ranging application that included a video, details of his achievements and an essay he devoted to the need for a social media app designed for the adult cystic fibrosis community.
“As far as I know I don’t see anything close to that,” Acedo-Holmquist said. “There are certain Facebook groups and CF websites that may facilitate something like that. But as far as a true app dedicated to that, I haven’t seen anything to that.”
The scholarship award was great news to his parents, who have been forking over nearly $10,000 a year on sophisticated medications he must take every day of his life.
“Without insurance, I don’t know how people do it,” said Patty Acedo-Holmquist, Vinnie’s mother. “The regimen is pretty grueling.”
Cystic fibrosis patients must deal with a thick, sticky mucus that’s produced in certain organs throughout their bodies, most commonly the lungs and digestive system.
The mucus buildup in the lungs causes difficulty breathing and could lead to life-threatening lung infections. In the digestive system, the thick mucus may prevent proper food digestion, potentially leading to malabsorption and malnutrition.
Statistics show more than 30,000 people in the U.S. are afflicted with cystic fibrosis. More than half of them are adults.
Vinnie’s daily morning regimen is daunting. He must take up to six pills every meal. One of the medicines he inhales costs $5,000 a month before insurance. Another daily pill runs $1,400 every month. Another he must take every day costs $900 a month.
Puls, a vest he uses to help break the mucus down from his lungs, costs up to $20,000 alone.
“It’s an insanely expensive disease,” Patty said.
That’s what makes the college scholarship so nice for the family. He’s taking 15 credit hours this semester as he prepares to transfer to ASU’s polytechnic campus in Mesa next year.
Because of his love for animals – or more specifically, reptiles – Acedo-Holmquist originally chose veterinary medicine for his major. But he soon decided that “chemistry wasn’t for me.”
So, he switched to business administration, but he’s still undecided about what kind of business he wants to open. All he knows is it’ll likely be animal-related in some way, much like his current employer, the Arizona Reptile Center.
“It’s a job I really enjoy,” Acedo-Holmquist said. “I would love to open a business similar to that.”
He owns several reptiles, including leopard geckos and an argentine boa, and has a salt water tank full of clown fish and coral. He even has scorpions in his collection.
Acedo-Holmquist still lives at home, but he’s been slowly transitioning into taking full care of his health. His parents were away for four months over the summer, giving Acedo-Holmquist his first taste of solo responsibility.
“He got it done,” Patty said. “He was adulting on his own. He handled all his appointments. He reordered all his meds.”
She said that’s not always the case with cystic fibrosis patients.
“I’ve been part of the CF family advisory group, and we have some kids that aren’t doing so well,” She said. “Some of them have rebelled against treatments and don’t take care of themselves. I feel blessed that Vinnie takes care of himself.”
Besides the medication, Vinnie always has to make sure to keep clean, constantly washing his hands and making sure surfaces he comes into contact with are sterile.
“We’ve definitely gone through the supply of Clorox in the house,” Vinnie said.
Too bad insurance or a scholarship can’t pay for that, too.