A deputy sheriff’s squad car, lights ablaze and sirens blaring, recently raced to Benjamin Clackum’s house on a sleepy residential street in Lawrenceville, Georgia, but no one was getting arrested. In fact, it was quite the opposite.
Clackum was being presented with an AffloVest, a device that would make his life with cystic fibrosis (CF) easier. Thirty cars followed the police escort past his home, sounding long, blaring honks and bearing homemade signs of congratulations and cardboard cutouts of Clackum’s face.
“I was shocked,” Clackum told Cystic Fibrosis News Today in a phone interview. He thought he was dreaming. “I didn’t want to pinch myself because this is a really good dream. I came to realize, no, this is not a dream; it’s really happening.”
Clackum was nominated to receive the vest through a partnership between the Colton Underwood Legacy Foundation and International Biophysics, which manufactures the AffloVest. The Legacy Project’s goal is to deliver the vest, which can cost up to $17,000 without insurance, to one CF patient in all 50 states.
“We’re following a shared belief of bringing help and up-to-date technology or therapy to the CF community,” said Neal Smith, director of marketing at International Biophysics, regarding its relationship with the Legacy Foundation.
Since the project’s inception in 2017, International Biophysics has delivered 24 vests across 18 states, with a few deliveries including siblings who have CF.
The application to nominate a family member or friend for the AffloVest is open for the remaining 32 states. Patients with CF also are able to apply. Applicants or nominees must be between the ages of 4 and 40.
A six-person selection committee, weighing physical and financial need, along with the difference an AffloVest could make in a patient’s life, submits its top choice to founder Colton Underwood for final approval. That committee includes three members of the Legacy Foundation board of directors and three members who are directly affected by CF, either as a patient or relative.
In the application for Clackum, his mother, Evie Clackum, wrote about how her youngest son was a “miracle child.” Benjamin was born 10 weeks premature and lost 20% of his intestines because of a bowel obstruction. While he spent his first five months in the hospital, he developed a yeast infection that led to hearing loss. He also battled a learning disability throughout school.
Now, at 23, Clackum attends Gwinnett Technical College. While he still lives at home, his mom attests that he’s as independent and disciplined as ever — making his own food because of his milk allergy and maintaining a strict treatment schedule.
“I feel like I’m responsible now,” Clackum said of everything he does to maintain his health.
Adapting for the pandemic
On April 23, Evie Clackum got word that her application for her son was accepted. He would be getting the vest he always wanted, but the current COVID-19 situation wasn’t making it easy.
Before self-quarantine measures began and Underwood himself was diagnosed with COVID-19, the 28-year-old retired NFL linebacker and a star of the TV show “The Bachelor,” would show up in person to present the vest along with an individualized experience. That included throwing the first pitch at a Chicago Cubs baseball game, walking the red carpet at a charity event, and meeting P.J. Fleck, head football coach of the University of Minnesota Golden Gophers.
During the pandemic, International Biophysics has opted to ship the vests, and the Legacy Foundation organized a Zoom videoconference with Underwood and the biotech company’s representatives for the four most recent recipients.
“Something like the coronavirus is nothing new to them,” Underwood told Cystic Fibrosis News Today. “We’re just like the CF Warriors, now we have to battle through adversity and … keep moving forward.”
Evie Clackum came up with the idea of the car parade for Benjamin. She had seen videos on social media and began calling everyone she knew. She had only a handful of days until the planned May 3 presentation at 6 p.m. On the morning of the planned celebration, she got a call: the deputy sheriff of Gwinnett County was coming. It was a lot for Benjamin to take in, having just finished finals for his radiology tech degree.
“I didn’t sleep at all that night because I was so happy and full of energy,” Clackum said.
The AffloVest is one of many available high-frequency chest wall oscillators, which help to loosen mucus buildup in the lungs. Typically, bursts of air from a separate machine inflate and deflate the vest to induce vibration as if someone was clapping on the chest. The AffloVest, however, uses eight battery-powered motors to achieve the same result and weighs only 10 pounds.
“It’s made it a lot easier for me,” Clackum said of his treatment regimen with the AffloVest, which can last up to one hour in the morning. “I’m able to move around. I can actually go up to my room and study.”
He’s also gone on walks outside while wearing the vest, which would have been impossible with the one he had before, which required tubes and being tethered to an electrical outlet.
“I’m finding that with the AffloVest, he’s doing it more often, which is even better,” Evie Clackum said, adding that Benjamin uses his new vest three to four times a day as opposed to twice with the old one. “It’s not quite as cumbersome and frustrating to deal with.”
For example, on Mother’s Day, Clackum and his family, including his younger sister and older brother, drove an hour south to see his grandmother in Conyers, Georgia. Instead of having to wake up an hour earlier to do his treatment, Clackum strapped on the AffloVest in the car and fastened his seat belt. He did the treatment the entire ride there.
Because the AffloVest relies on battery-powered motors rather than air pressure, it’s a lot quieter. Clackum can watch TV or play video games with his family without having to turn up the volume.
Clackum found out about the Legacy Project while watching “The Bachelorette” with his grandfather, who watches the show religiously. Underwood was on the 14th season of the show and mentioned the foundation he started for his cousin. Clackum Googled the organization and told his mother about the project. Evie Clackum then decided to nominate him.
Underwood started the Legacy Foundation in 2015, inspired by his 8-year-old cousin, Harper Hawksworth, who has CF. In addition to the Legacy Project, Underwood’s foundation organizes children’s hospital visits and yearly football camps. It also raises money for hospital medical devices and research.
Giving away the vests, according to Underwood, fulfills a purpose to help people in need. It’s something he said he learned early on from watching Tim Tebow, a former NFL quarterback and current minor league baseball player.
“Scoring touchdowns and having sacks and being on TV, ‘famous,’ whatever that is, while that’s great, doesn’t make me the happiest,” Underwood said. “What makes me the happiest is being able to give back and share these moments with these kids and adults.”
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