Ocoee boy with juvenile arthritis hopes to spread awareness

OCOEE — It took Chris and Desirae Arana 18 months to get a diagnosis for their preschooler’s painfully swollen finger. After 18 months of visits to pediatricians, hand surgeons, imaging centers and finally a rheumatologist and an ophthalmologist, the Ocoee residents were given an answer in September 2012. Their son, Gaven, had juvenile arthritis — more specifically, juvenile idiopathic arthritis with associated uveitis.

By the time his disease was diagnosed, he had developed swelling and pain in his right knee, as well as his left hand. He had trouble gripping and opening things, running, climbing and playing catch. It was hard to be an active little boy.

Now 7, Gaven no longer has to deal with pain and stiffness in his knee and index finger or pain and light sensitivity in his right eye. Climbing out of bed in the morning with aching muscles is a thing of the past.

At present, he is considered to be in medicated remission, his mother said, but it’s a victory that comes with a price.

Every three weeks, Gaven must endure an injection of the prescription drug Humira, which is painful and makes him sluggish for the next few days, Desirae Arana said. It’s hard on her and her husband, too, knowing the agonizing discomfort it causes their son.

“And his skin can’t be numbed beforehand,” she said. “The sting doesn’t come from the poke; it comes from the liquid hitting the muscle.”

Shot night frequently becomes hide-and-seek night; Gaven has been known to hide in fear of the pain when he knows the shot is imminent.

“One hard shot night, Gaven cried and screamed, ‘It’s not fair; why do I have to have arthritis?’” Arana said. “Gaven is a warrior, even if the shots hurt or make him sick.”

He has even become a spokesperson for juvenile arthritis at Hope Charter School, where he just finished first grade. Gaven was shy about his diagnosis at first, not wanting any of his classmates to know why he ran slowly at times or why he had to leave the classroom every hour to get eye drops. But now, he will openly discuss his affliction and answer any questions his friends have.

“He went from not wanting to talk about it to being his own little advocate,” Arana said.

TEAM GAVEN

Last October, Gaven was selected as the youth honoree at the kickoff for the Central Florida chapter of the Arthritis Foundation’s Jingle Bell Run/Walk in Orlando, and his mother publicly shared their journey to diagnosis and treatment and what Gaven’s life is like today.

“Over the last two years, we have tried to find the silver lining,” Arana said. “Doctor visits are followed up with milkshakes, and hospital visits come with all-you-can-drink Mountain Dew passes. Shot night extends bedtime from 8 p.m. to 9 p.m. And getting to leave school early for a doctor’s appointment is pretty darn cool.

“Days are filled with doctor visits, occupational and physical therapy, pharmacy phone calls, lab work, watching out for flares and not knowing what the future will bring for Gaven and our other children,” she said. “Nausea, fatigue, exhaustion, mouth sores and loss of appetite are the symptoms Gaven lives with.”

Jingle Bell Run/Walk is an annual 5K held at Christmastime, most recently in Baldwin Park. It’s an opportunity to raise money and awareness for the Arthritis Foundation, and it brings their family and the community together, Arana said.

It’s a big family affair, and participants get to dress up in holiday gear. Last year, Gaven dressed as an elf, and his father and brother wore Santa Claus costumes.

The Arana family holds fundraising events and collects donations throughout the year, all of which is given to the Arthritis Foundation in December. To make a donation in Gaven’s name for the foundation, visit jbr.org/orlando/gaven.

Arana said they try to plan fun fundraising events so Gaven will want to participate. They have hosted a lemonade stand at the Ocoee Little League field, an annual pumpkin bread sale in the fall and the Blue Nail Polish Challenge.

Seeing his dad sport blue nail polish was a bright spot for Gaven. A goal of $300 was set, and family and friends donated $650 for the chance to witness blue fingernails on Chris Arana. He also wore a button that read: “Ask me why my nails are blue.”

“People are so unaware of juvenile arthritis,” Desirae Arana said. “The biggest thing besides raising money is raising awareness.

“Gaven has learned the importance of helping his cause in any way a 7-year-old can,” she said. “He’s a trooper, and we are teaching him to fight for a cure in his lifetime, whether it be fundraising, creating awareness or doing whatever it takes to find a cure.”

Until a cure for juvenile arthritis is found, though, Gaven will have to endure those painful shots and attend regular doctor appointments to stay on top of this chronic disease.

“In our house, we celebrate victories in any way they come because we don’t know how long they will last,” Arana said. “Gaven is a warrior.”

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BLOCKING JOINT PAIN AND SWELLING

Usually, the immune system defends the body from things that can harm it. When the system doesn’t work right, as in an autoimmune disease, it can attack healthy tissues and organs. The immune system can overproduce a protein called tumor necrosis factor (TNF), a source of inflammation. Humira is a medication called a TNF blocker, binding to TNF molecules and blocking them from attaching to and attacking healthy cells.

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 Contact Amy Quesinberry Rhode at [email protected].