LOUISVILLE, KY (WAVE) - Rheumatoid Arthritis is a painful auto-immune disorder that usually begins at age 40 and causes chronic joint pain and swelling.
A southern Indiana family dealing with the condition and they're making a plea for your help.
LorelLee and Jon Neill are trying to get as many people as they can to come to Louisville Slugger Field Saturday morning to support the 11th annual Louisville Arthritis Walk. At first, it seemed their situation was unusual, but surprisingly it's more common than we thought.
LorelLee Neill explained, "It's knee pain and it's the elbows." It's not often that both a wife and her husband live with the pain of Rheumatoid Arthritis. The couple doesn't have the disease, they have something worse. They live with it because they are forced to watch their 7-year-old daughter suffer with it and she's been doing that for the last six years.
"You don't expect Arthritis in a child," LorelLee said, "Especially a baby."
At 12 months, they found Lydia in her crib with softball size swelling on her knees that she still gets today. The mom and dad were certain an Immediate Care doctor's initial diagnosis of Lydia couldn't possibly be right. "We were in total denial," LorelLee told us, "just like every parent I think would be, you know?"
Their energetic baby with Juvenile Rheumatoid Arthritis started regressing. Jon remembered, "Your little girl that was walking was now wanting to drag herself with her arms on the floor and it was a very hard thing to watch."
At 18 months, Lydia began three years of physical therapy. Mom and dad now allow Lydia to play with her little brother and other kids, but she tires quickly.
Young Lydia said, "I can run still in baseball, but if my legs hurt, I just go sit on the bench."
Because her bones are fragile, simply playing with her cousin led to a broken bone and a cast.
Like someone a half century older than her, Lydia wakes up in bed stiff with pain. "You don't know where to turn or what questions to ask and you kind of feel lost," Jon said.
To help with her pain, Lydia gets shots twice a week and endures some very adult medication. "She was on Methotrexate, that's a cancer medicine and she was on Naproxen and she was on Enbrel, "LorelLee told us.
To say Lydia is a trooper is an understatement.
"I just think about a different thing, like sometimes close my eyes and don't think about it," Lydia said about getting the shots.
The second grader had to grow up fast. She's vigilant about washing her hands and not getting close to sick kids.
LorelLee said other kids around Lydia, "If they have a cough, she gets strep throat because her medicine kills her white blood cells and she can't fight off infection as fast as other kids."
Lydia isn't alone, the biggest misconception about the chronic illness is who gets it. Molly Young, the Kentucky Branch Director of the Arthritis Foundation said, "There are 300,000 kids in the U.S. with some form of the disease, nearly 4,000 in Kentucky and more than 6,000 in Indiana."
The 2013 Louisville Arthritis Walk raises money for research, including drug research to help kids like Lydia find their medications without added testing and hopefully future options other than taking shots.
It also helps families connect. Lydia met another young girl going through the same thing.
Lydia said of her new friend, "I asked her what does arthritis feel like to you? And I asked her do you have to take shots?"
To help her friend and other families, this mature 7-year-old offers you this invitation.
"It's really fun," Lydia said of the Louisville Arthritis Walk, "and I hope you will come."
Fifty million Americans have some form of Arthritis. The walk is this Saturday morning September 14, at Louisville Slugger Field.
The walk benefits local programs and services. It's non-competitive and there are 5K and 1 mile routes.
Registration begins at 9 a.m., the walk is at 10 a.m. Both individuals and teams are welcome.
For more information about the Louisville Arthritis Walk, click here.
Tuesday, April 20 2010 11:21 PM EDT2010-04-21 03:21:00 GMT
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