When Mariah Aquino-Truss was just five years old, she was in so much pain each day she told her mom, Tory, that she “didn’t want to be here anymore.” Imagine hearing such an admission from your young daughter who was newly diagnosed with a form of juvenile arthritis (JA) known as polyarticular spondyloarthropathy.
Polyarticular spondyloarthropathy is a juvenile form of ankylosing spondylitis, a chronic, long term disease that affects the joints, ligaments, tendons and entheses. Shocked, saddened and ferociously determined to help Mariah and her family, Tory set out to find help – a road that led her to the Arthritis Foundation.
Continue reading A Dream Come True – Meet Our 2017 National Youth Honoree Mariah Aquino-Truss
When you meet Amy McCormick and her daughter, Kylie, of Hauppauge, New York, you instantly feel as though you’ve known them for years. They both consistently greet you with warm smiles and joyful hellos, chatting about their love of Hamilton, the arts and their newly adopted rescue puppy named Autumn.
Continue reading Champions of Yes: Amy and Kylie McCormick Form a Dynamic Duo to Tackle Juvenile Arthritis
Born on July 4, Geoff and Sara Morthland called red-haired Ellery their “firecracker,” but at 19 months old, only Ellery’s knees were inflamed. They soon discovered the reason: juvenile arthritis (JA).
“I felt so powerless, Sara Morthland, Ellery’s mother, said. “I couldn’t make it go away.”
The Baton Rouge, Louisiana resident turned emotion into action and searched for a fundraiser supporting an arthritis cure. When she discovered Walk to Cure Arthritis, Sara was elated—only to learn Louisiana did not have a Walk.
Continue reading Volunteer Kick-Starts Successful Louisiana Walk To Cure Arthritis Event
This summer at the 2016 National Juvenile Arthritis Conferences, a charismatic young man proudly wearing a bright orange University of Florida Gators shirt walks briskly and with purpose throughout the conference areas. As he turns the corner, you can see the back of his shirt reads something unexpected. It’s not a last name like you might normally see on a Gators shirt – but the words “Parker’s Brother”, clear as day.
Continue reading Super Siblings Play An Important Role for Their Families
Tom Neville will be running his second TCS New York City marathon this fall. He describes his first marathon in 2015 as exhilarating and beautiful but painful. So why will Tom be running a second marathon? He is running in honor of his niece Brielle, only 5 years-old, who has juvenile arthritis.
Continue reading NYC Marathon Runner Helps Fight Juvenile Arthritis One Step at a Time
Until last summer, Ellie Pruitt was your typical little girl who loved to swing, draw with chalk on the driveway and feed the fish and turtles in the pond at the back of her house in Canton, Georgia, a suburb north of Atlanta. She was funny, smart and especially witty for a soon-to-be 4-year-old (and soon-to-be big sister).
But almost a year ago, Ellie started complaining about her legs hurting all the time and feeling tired. She started playing with her toys at the kitchen table because it was too painful to play on the floor. She couldn’t sit with her legs and feet crossed, unable to bend her knees 90 degrees. Her parents thought it might just be growing pains.
Continue reading Meet the Pruitts, Warriors Against Juvenile Arthritis: “We’ve got to be upbeat and positive”
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