Each year, more than 300,000 children are affected with juvenile arthritis. Juvenile arthritis is not a disease itself but rather an umbrella condition to describe several autoimmune and inflammatory conditions in children (www.arthritis.org). July has been designated as Juvenile Arthritis Awareness Month to encourage recognition of these conditions affecting so many children. The Nelson family has discovered the challenges in dealing with one such condition diagnosed in their daughter at a very young age.

Lydia Nelson, a Yankton native, and husband Tyler live in Harrisburg, SD with daughter Layla, now age eight. When Layla was just a toddler, Lydia noticed that something was amiss about the girl’s health while Tyler was serving a deployment in Iraq. She saw that the toddler’s knee-caps would rotate to th eoutside of her legs and that she had trouble keeping up with kids her same age.

She took her two-and-a-half year-old to the pediatrician and it took more than six months before testing was complete and the cause was discovered.

Layla was diagnosed with Oligoarthritis, a type of juvenile arthritis. Layla is a textbook case, having most of the symptoms as noted with great impact on her knees. A primary concern with inflammation of big joints in children is the possibility that it can stunt their growth in that limb, for instance inflammation in the one knee could cause one leg to be of different length than the other.

“She’s got the arthritis, but the main thing that we deal with is the side effect of the arthritis.” Lydia explains that arthritis can also cause symptoms all over the body, other than in the joints, for instance the eyes. Layla has experienced inflammation in her eyes, called uveitis, which requires regular trips to an Ophthalmologist varying from every two weeks to every three months.

Layla has been working with a rheumatologist in Minnesota for treatment.

When first diagnosed, she was given a cortisone shot in her kneecap to reduce the swelling, but it didn’t remove her pain. They have now started with a new medication that works well for her. The medication, taken once a week, is an injection. Because Layla doesn’t like needles, they have found that they can put the medication in a shot glass and dilute it with some apple juice and she can drink it.

Though her arthritis is something that she will always have, her doctors are hoping that the medication that she is currently on will put the arthritis into medicated remission. The arthritis and its branching symptoms would then be something that they would watch for in the future.

The symptoms of Layla’s arthritis can come and go throughout the day or even the week. “There’s no rhyme or reason to why she hurts or when she hurts. We’ve had good weeks, we’ve had a couple bad days,” explains Lydia.

The energetic 8-year-old doesn’t let her condition hold her back. She excitedly tells me how she races the boys at recess… and she wins! She likes to keep her races short, explaining that she participated in the 50-meter run instead of the 100- or 400-meter run during field day at the track meet. She’s not afraid to rest when needed, stating sweetly, “Sometimes I have to take a break when I’m doing a race or something.”

Layla’s school offers the 504 Plan, allowing her to sit out in gym class if she feels necessary, especially during high-impact activities which seem to cause her the most trouble. Though sometimes she finds this class difficult, such as when they play tag, she has found a support system in the gym teacher and the school’s secretary, who both deal with some type of arthritis and are of great encouragement to Layla.

The ambitious young girl likes to read, play Legos, make crafts and sing in the school choir. “I like to dance a lot,” she exclaims, stating tap and hip hop as her favorite styles.

The compassionate young girl considers what she would tell others about arthritis. “I sometimes tell (my friends) that I have arthritis and I try to explain about arthritis, but if someone else had arthritis, I would tell them that they’re not alone and I feel what they’re feeling.”

Her mom describes her daughter’s strength. Because of the medication that she’s on, she needs to have her blood drawn every three months when she visits her doctor in Minnesota. The courageous young girl, though not a fan of needles, remains calm and still as she chants, “I feel brave.”

They don’t mind the regular visits to the doctor, trying to make a weekend out of each one and visiting some fun sights. Lydia says, “She knows that she’s got to stay healthy and that’s the way that we find out if she’s doing ok and it’s very important that we stay on top of it.”

The hardest part for the Nelson family has been limitations in being able to assist Layla. “It’s hard to see your child in pain and be something I can’t help her with,” Lydia explains. When Layla was younger, she could ride in a cart or stroller when she was tired from walking. Now, it’s a little different as Layla’s about as tall as her mom and can’t be carried any more when she gets tired or hurts.

“It just takes us longer to get us there.” Lydia describes how they just stop to take breaks when Layla needs to.

Her advice to others? Don’t judge others and be open-minded. If Layla is running and she sits down for a bit she’s not being lazy, she just hurts. Lydia explains that it’s hard for her to think about others making judgments about her daughter before really knowing the situation.

She has found the Arthritis Foundation’s website to be a great resource and recommends signing up as a member of the Arthritis Foundation-South Dakota group http://www.arthritis.org/south-dakota/. Here she has access to literature, notification of events in the area and Layla even received a free ice/heating pack bear. She has been surprised to see others with the same bear when out at Layla’s appointments.

Layla’s bubbly personality and courage for teaching others about her condition is that of someone more than three times her age. This enthusiastic young girl shows that we can learn from someone who might be many years younger and that inspiration can be found in all ages.