Tag Archives: juvenile arthritis

Logan Lentini Parker Lentini Juvenile Arthritis

Super Siblings Play An Important Role for Their Families

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.
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Arthritis Foundation NYC Marathon

NYC Marathon Runner Helps Fight Juvenile Arthritis One Step at a Time

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.
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Ellie Pruitt Juvenile Arthritis

Meet the Pruitts, Warriors Against Juvenile Arthritis: “We’ve got to be upbeat and positive”

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.
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Parket Lentini Arthritis Foundation

Their Unshakable Spirit: Why Parker and His Family Walk to Cure Arthritis

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.
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Animals for Arthritis Charity

Crocheting for a Cause: Juliette Harrison Handcrafts Animals for Children with 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.
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Giving Tuesday Donate to the Arthritis Foundation

Expanding their Village: Carson and the Arthritis Foundation

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.

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Juvenile Arthritis Pain Carson Rose

When Being a Child Hurts: Even Medicine Can’t Make it All Better

Carson Rose Juvenile Arthritis PainLike 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.

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Polyarticular Juvenile Arthritis Carson Rose

Meet Carson Rose: Redefining Normal & Turning a New Reality Into Yes

polyarticular juvenile arthritis- carson roseBy 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.

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mariah's movers juvenile arthritis

A Family of Warriors: How Mariah Aquino-Truss and Her Family Fight JA

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.

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Chase Bryant Music for Mobility Concert

Chase Bryant Hosts First Annual Music for Mobility Concert to Benefit Arthritis Foundation

Chase Bryant Arthritis Foundation benefit concertNothing 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.

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