7-year-old stays strong through pain, frustration

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7-year-old stays strong through pain, frustration

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Published: April 27, 2011

sville residents Amy and Larry Cunningham say their daughter, Jenna,

has always been " the princess. "

" As the youngest of three, she has been babied since the day she was born, "

said Larry with a laugh. " We all know our place and who rules the house. "

The two also describe 7-year-old Jenna as " tough " - but, then, she has to be

to cope with juvenile arthritis every day.

As a stay-at-home mom, Amy said she was surprised when her husband commented

on the shape of Jenna's knees before a beach trip in 2008.

" I was busy trying to get the kids ready to go, and when Larry said

something about her knees being square, I thought he was crazy and brushed

it off, without even looking, " said Amy. " Then, while we were at the beach,

my mom asked the same question. I took a closer look and we went to the

doctor. "

Looking back at pictures, Amy said she couldn't believe she didn't notice it

before.

" Her knees were definitely swollen, and her pediatrician agreed something

wasn't right, " she said. " There was a massive build-up of fluid and tissue,

so we were sent to a rheumatologist and, after some blood work, we were

given the diagnosis of arthritis within two days. "

Approximately 294,000 children under the age of 18 are affected by pediatric

arthritis and rheumatologic conditions, according to the Arthritis

Foundation. The cause of juvenile arthritis is unknown.

Shortly after Jenna's diagnosis, the Cunninghams decided to move from their

home in Maine to the warmer climate of sville.

" She had to have a warmer environment for sure, because winters in Maine

were so miserable for her, " explained Amy. " Jenna would lie in bed crying

because her joints hurt and when she got outside, she would literally freeze

up and I had to carry her. She was in so much pain that we didn't even have

a plan; we just packed up the car and came down. We were so lucky that it

worked out. "

The family was also lucky that Duke Hospital had doctors who specialize in

juvenile arthritis, as they are few and far between.

" We had been seeing a rheumatologist that was used to treating adults, and

as soon as we got to Duke, they told us she was on the wrong medications, "

said Amy. " She's improved so much since we moved here; it's amazing. "

Jenna still struggles with the fact she is not a normal child, said Larry.

" She desperately wants to do what her friends are doing, and she can't, "

said Larry. " We've signed her up for dance, cheerleading and karate, but she

can only do it once or twice before it wears her down too much and she can't

continue. She tries to keep up the best she can, but it's just not

possible. "

She constantly battles fatigue due to her diagnosis and must take weekly

injections to keep her swelling under control.

" She also takes daily medication to counteract the side effects of the

injections and she's starting physical therapy, " Amy said. " She has a lot of

muscle weakness in her legs and her hamstrings are very tight. "

" We felt horrible when we learned that it's very uncomfortable for her to

stretch out her legs, because we constantly tell her to not sit with her

legs tucked under her, " said Larry. " We thought it would be damaging to her

knees, and it turns out she physically can't stretch her legs. She never

complained about it hurting, so we had no idea. We think there are a lot of

things she's just gotten used to and coped with because she doesn't know any

other way. "

Long-term, there is a slim possibility that Jenna will outgrow the

arthritis, but her parents aren't counting on it.

" That doesn't happen very often, so we're just taking it day by day, " said

Larry.

" We hope we have it in medicated remission right now, and eventually we can

take her off the meds to see what happens, " said Amy. " If it comes back, we

put her back on her medicine. This could last for the next six months, the

next year, or forever. "

In the meantime, Jenna must be checked constantly because her arthritis can

spread to her eyes, possibly causing glaucoma or blindness due to

inflammation.

Another complication is that Jenna's medication suppresses her immune

system, since juvenile arthritis is an autoimmune disorder. That means when

she gets strep throat or an ear infection, she has a hard time shaking it

off.

" In February, she kept coming down with strep and we tried four different

antibiotics with no luck, " Amyexplained. " We finally had to take her off of

her arthritis medicine so she could heal. It's always a delicate balance

between the chronic and current conditions. "

The Cunningham family is participating in the Arthritis Foundation's

Charlotte Walk on May 14, hoping that the money they raise will eventually

lead to a cure for Jenna.

" Last year, we raised $1,100, which I'm pretty proud of, and this year, we've

set another goal of $1,000, " saidAmy. " We're going to try to do a yard sale

and we've put some items on Ebay. We've also teamed up withCannon Pharmacy,

who is completely wonderful and gets us all of Jenna's medications. They're

selling little paper bones for us from the Arthritis Foundation, as is Lake

Norman Veterinary Hospital. "

In addition to raising money, Amy and Larry want to educate the public about

juvenile arthritis.

" We have so many people come up to us and say that Jenna doesn't look sick

or she looks fine, and on that particular day, that may be true, but it's

not helpful to say that, " Larry said. " The community needs to know the daily

ins and outs of how arthritis operates because it can strike anyone. "

" We have a blog, www.jennabeansjourney.blogspot.com that has a lot of

information about what Jenna has to go through, " Amy added. " So many people

don't realize that kids can get arthritis. "

Both encouraged anyone who is uninformed about the condition to visit their

blog or go to www.arthritis.org for more information.

" Jenna is so strong; we know she'll make it through this, " they said

confidently.