To say that Parker Lentini’s life has been like riding a roller coaster the past few years may be an understatement. He and his family have endured more nerve-wracking ups and downs than most people experience in a lifetime. Yet it’s their hope and faith, and trying to hold on to the highs they encounter along the way, that help them get through the low spots, when it feels like their lives have been turned upside down. Again.
Parker, who’s 16 and lives with his family in Tampa, has been hospitalized more than two dozen times since he was diagnosed six years ago with systemic onset juvenile arthritis (sJA) – with “overlapping conditions,” as well as hypogammaglobulinemia, severe allergies and asthma.
Continue reading Their Unshakable Spirit: Why Parker and His Family Walk to Cure Arthritis
When you’re feeling down, almost nothing feels better than a snuggle with your favorite friend. Nobody knows that better than Juliette Harrison.
At just eleven years old, Juliette was diagnosed with juvenile arthritis (JA), an inflammatory disease that affects nearly 300,000 children in the United States. With the telltale red joints and persistent pain, she was forced to scale back on many of the activities she loves, like horseback riding and running. Understandably, Juliette was sad and in need of a special friend to take with her to all of the doctor’s appointments in her future. But, it couldn’t be just any friend. This friend needed to be like Juliette. She needed to have arthritis, too.
Juliette’s mom went on a search to find a doll or stuffed animal that Juliette wanted. There were animals with glasses or braces. There were even dolls with casts or in wheelchairs. But there wasn’t the one doll Juliette needed. Fortunately, Calesta, Juliette’s mom, found a vendor on Etsy who was willing to custom make a doll for Juliette. The doll, named Love, began accompanying Juliette to every appointment with her pediatric rheumatologist.
Continue reading Crocheting for a Cause: Juliette Harrison Handcrafts Animals for Children with Arthritis
The saying goes that it takes a village to raise a child. Chrissy Rose had always known that statement was true, but when her toddler son, Carson, was diagnosed with juvenile arthritis (JA) at 15 months, she felt it even more acutely.
“We hardly understood that our child could have arthritis, let alone knew anyone else who was dealing with it,” recalls Chrissy. “We were a little lost.”
After moving from Ohio to Indiana far away from most of their family and friends, the Roses connected with their local Arthritis Foundation in Indianapolis. While they formed a small team for their first event– the Indy Walk to Cure Arthritis — they found inspiration to expand their team and fundraising efforts for the next year’s walk.
Continue reading Expanding their Village: Carson and the Arthritis Foundation
Like a lot of three year olds, Carson is still working on his “th” sound,” so it should come as no surprise that when he talks about arthritis, it sounds more like “arfritis.” What is surprising is that he has to talk about arthritis at all.
Diagnosed with juvenile arthritis (JA) when he was just 15 months old, Carson is just one of nearly 300,000 children who have JA. Carson’s arthritis is polyarticular, which means it affects five or more joints. While Carson initially struggled mostly in his knees, he also has limited mobility and increased pain in his wrists. While you’d think that pain would be a clear indicator of arthritis, for Carson and thousands of other children, getting a diagnosis was not that simple. The myth that arthritis is only for older people persists.
Continue reading When Being a Child Hurts: Even Medicine Can’t Make it All Better
By most accounts, Carson is a typical three-year-old boy. His room is decorated with superheroes. He can’t get enough of the Teenage Mutant Ninja Turtles. He’s counting down to his fourth birthday. He loves to color. Trucks and dinosaurs are frequent playmates. But there’s one way — and it’s a big one — that Carson isn’t typical at all. He has juvenile arthritis (JA).
Though it took several months, Carson received his official diagnosis of polyarticular juvenile arthritis, meaning it affects five or more joints, when he was just 15 months old. His mother, Chrissy, suspects he had been in pain for much longer.
Continue reading Meet Carson Rose: Redefining Normal & Turning a New Reality Into Yes
When Mariah Aquino-Truss was four-years-old, she named one of the bumpy hills near her house the “Arthritis Hill,” because every time she and her mother, Tory, drove over the hill, the bumps in the road would cause her to cry out in pain.
“She was old enough to know something was different, but not old enough to know how to process it,” says Tory.
Mariah began experiencing arthritic symptoms around age three, when she had severe neck pains that became so bad that she had difficulty moving her jaw. But when Tory would drive her to the emergency room, they were told there was nothing they could do.
Continue reading A Family of Warriors: How Mariah Aquino-Truss and Her Family Fight JA
Nothing is more important to 23-year-old singer/songwriter Chase Bryant than his love of music or his commitment to his family. So when his 15-year-old cousin, Emma Bryant, who was diagnosed with juvenile arthritis (JA) at age 11, told Chase that she was striving to raise at least $20,000 to help find a cure for arthritis, Chase didn’t hesitate to help – and the first annual Music for Mobility Concert was born.
Music for Mobility will take place on November 22 at the Listening Room in Nashville, Tennessee, featuring Chase and several of his musically-accomplished friends, including Brooke Eden, Carlye Pearce, Derreck George and Shane Minor. All of the proceeds from the event will go towards the Franklin, Tennessee Jingle Bell Run/Walk, an annual 5K sponsored by the Arthritis Foundation to raise funds that will support vital research and education programs to improve the lives of those with arthritis.
Continue reading Chase Bryant Hosts First Annual Music for Mobility Concert to Benefit Arthritis Foundation
Life is full of unexpected twists and, oftentimes, people define ourselves by how they react to these unforeseen moments. Bella Sorensen’s life was drastically altered at the age of 13 when she was originally diagnosed with rheumatoid arthritis. Bella, now 17, lives with arthritis, but, like many children and teens with arthritis, their families must live with the disease too.
This is Bella’s story—but it’s also her mother’s story to tell as well.
Dorte Sorensen, recalls a time prior to Bella’s diagnosis, “Four years ago, I would have never imagined I would be here talking about my Bella having this horrible disease in the 8th grade as a 13 year-old.”
Continue reading Bella’s Journey: Arthritis Means a Family Must Adjust to the Disease, Too
As chair of the Arthritis Foundation’s board of directors and father of a child who was diagnosed with juvenile arthritis (JA) at an early age, Mike Ortman is no stranger to the debilitating effects of arthritis. Mike became involved with the Arthritis Foundation, along with his wife, Kate, after their son Daniel was diagnosed with JA when he was 11 years old. Now 27, Daniel, who spent most of the last two years homebound and unable to work, is still fighting to achieve everyday victories.
Over the years, Mike has watched many unique and awe-inspiring ideas the community has leveraged to conquer arthritis. From Jen and Keagan’s 1,400-mile odyssey to the JA Conference, to Tom Baltes’ 16-state ride, David Shuey’s inspiring coast-to-coast ride, and the California Coast Classic (CCC), Mike has consistently been drawn to the idea of bike riding to raise money for a cure.
Continue reading The Keys for a Cure: The Ortmans Take to the Road to Support the Fight Against Arthritis
The use of her hands is incredibly important to Hannah Robison. As the reigning Miss Tennessee, her talent is playing the piano. As a chemistry major in college, she is constantly writing and using her hands in the lab. So when she developed pain in her hands, she initially chalked the pain up to overuse.
“I didn’t think much about it at first, but then the pain moved from my knuckles into my wrists,” says Hannah. “Then the doctor told me that no matter how long I’d been playing the piano, at my age, I still shouldn’t be in pain.”
After many tests and appointments, Hannah still doesn’t have a concrete diagnosis for her pain. That hasn’t stopped her from becoming a huge supporter of the Arthritis Foundation. Continue reading Crowning Achievement: Miss Tennessee Champions Arthritis Awareness