Raising awareness at Walk to Cure Arthritis Tampa event, and beyond
PARKER LENTINI, a local 16-year-old with a different story to tell, was an active kid who enjoyed sports. When he started experiencing severe aches and pains in his bones and joints, many around him chalked it up to growing pains. When fevers, rashes, and stomachaches became a problem, Parker’s parents realized there was something more serious going on.
Parker was diagnosed with polyarticular systemic arthritis with overlap syndrome at just 10 years old. It affects his joints, bones, and organs. He is not alone. More than 300,000 children in the U.S. are living with arthritis, in addition to more than 50 million adults.
Even in his own family, Parker is not alone. His brother, Logan, was diagnosed with spondyloarthropathy at age 13, and their mother also suffers from rheumatoid arthritis. They can’t be sure, but the family believes there is a genetic component to the disease.
Parker was very athletic before his diagnosis, but his life changed a lot afterward. Steroid treatment has caused him to gain weight, and there are days when he wakes up and just can’t move.
“He’s had reconstructive surgery on both of his ankles and feet,” says Parker’s father, Michael Lentini. “They actually added a cadaver bone into his foot and his body rejected it, so in November of 2015 he had to have his ankle fused together. Not only is it affecting his organs and joints, and everything else, but also his bones.”
His athletic involvement is not the only part of his life affected, either; being a part of a conventional school system also became a challenge. Currently, Parker homeschools and intends to complete his GED soon.
Movies and photography have taken the place of sports in Parker’s life, and he is very active in educating the public about arthritis. “When I was diagnosed, I was talking to friends at school, and I started to realize how little people actually know about arthritis. Very few people knew that kids can get it, and it isn’t just something that affects your hands,” Parker says. “As I started to figure this out, I realized it’s kind of a big deal that nobody knows.” Parker began speaking to his friends and people around him. Then he started a blog. Now he speaks publicly to educate people about arthritic conditions.
The challenges and experiences faced by Parker and his family have motivated them to help others in a variety of ways. For the last several years, they have participated in the Arthritis Foundation’s Walk to Cure Arthritis. This annual event raises funds to support research and provide services for those living with arthritis.
“Arthritis is more than just a few minor aches and pains. It’s a debilitating disease that robs people of their dreams,” says Dr. Karl Metzger, local Arthritis Foundation leadership board chairman.
This year’s Walk to Cure Arthritis Tampa event took place on May 7, at Al Lopez Park. About 650 people took part, including the Lentini family. The event brought in more than $100,000, and a whopping $25,000 of that was raised by Parker’s Purple Playas, his family’s team. Parker has been one of the top fundraisers for the past five years.
The Lentini family supports the Arthritis Foundation because they know the good work they do. For example, the organization sponsors kids to spend a week at Camp Boggy Creek. Located in Eustis, Florida, this camp provides a medically safe environment for children struggling with serious illnesses. Campers are able to participate in fun activities like fishing, climbing, and woodworking while having the care they need on hand, and the ability to stop and rest when necessary. It is part of the SeriousFun Camp Network.
One of the most selfless acts Parker has performed was during a study he took part in at age 13. For the first month, he was placed in the placebo group, meaning he received no medications for 30 days. Given the option to remove himself from the study, Parker was willing to risk his own well-being and comfort if it meant helping other kids down the road benefit from new medicines.
Parker Lentini and his family aspire to set an example through courage, compassion, and teamwork. Parker will be starting community college soon, and is determined to make his own mark on the world. “I just want to be able to help other kids with arthritis, whether as a nurse or as a counselor at one of those camps,” he says. “I want people to know that kids can get arthritis.”
article by TERESA SCHIFFER