Merlene Davis: Family hopes fund-raiser will help daughter, others with rheumatoid arthritis

Fund-raiser for hospital could help daughter live with the disease

Herald-Leader columnistAugust 27, 2012 

  • If you go

    Fore!Kids Foundation golf event and a Fore Ladies event, featuring a silent auction, to raise money for an ultrasound machine for the Kentucky Children's Hospital's pediatric rheumatology department

    When: 10:30 a.m. Sept. 4, registration for the golf event. Fore Ladies silent auction 10:30 a.m. to 1 p.m., including luncheon

    Where: Champion Trace Golf Club, 20 Avenue of Champions, Nicholasville

    Cost: $700 a foursome, or $20 for the luncheon and silent auction

    Information: Call Rob Perez at (859) 321-5600

When Samantha Perez's fingers or toes weren't working quite right, her parents weren't really worried.

She was 12, after all, and for most children that age, growing pains are normal.

But in May, Diane Perez received a call from her daughter saying her wrist had popped out of its socket as she was taking notes in Spanish class.

That was not normal.

Samantha was later diagnosed with juvenile rheumatoid arthritis, the most common type of arthritis in children younger than 16. It affects about 50,000 children in the United States, and about 150 children in the Bluegrass area. No one is quite sure why.

There is usually pain and swelling in the joints. Samantha has pain only in her wrist, although the disease is present in her fingers, toes and jaw.

Samantha's parents, Diane and Rob Perez, began asking questions and researching the disease and soon learned of an ultrasound machine that could speed diagnosis and zero in on a treatment. But there isn't one at Kentucky Children's Hospital.

"Juvenile rheumatoid arthritis is a disease of exclusion," said Rob Perez, founder and president of Saul Good Restaurant & Pub. The disease is diagnosed by excluding other possibilities.

"It's a process," Samantha said. "Because doctors don't have an ultrasound machine, they basically have to feel with their fingers and guess, and patients have to have blood work done."

That process and be painful, and often long and drawn-out. But in the last couple of years, a new type of ultrasound machine is proving successful in detecting changes in small joints.

Dr. Carmel Wallace, chairman of the Department of Pediatrics at the University of Kentucky, said a point-of-care ultrasound machine is sensitive enough to detect changes in swelling.

"It makes the diagnosis a little quicker and a little easier," he said. "And it can help the clinician to monitor how the patient responds to therapies that can be prolonged and expensive."

Rob Perez wondered why UK didn't have that technology.

"They said they would love to have every brand-new machine out there, but they need advocates," Perez said. He and his family decided to become those advocates and find a way to raise $30,000 to buy the machine for the children's hospital's pediatric rheumatology department.

The Perezes hope the Fore!Kids Foundation golf event on Sept. 4 will seal the deal. It features low-score prizes, and a hole-in-one can win a new Mercedes Benz. Plus, Jay Harris, an anchor for ESPN and a friend of Rob Perez, will be there.

For those who don't play golf, there will be a Fore Ladies event that features a silent auction and a box lunch provided by Saul Good. The auction items include a Kate Spade purse, a basketball signed by Kobe Bryant, a Dallas Cowboys jersey signed by Emmitt Smith, and $1,500 toward a bathroom remodel.

"The community has been unbelievable," Rob Perez said. "It is hard to be a little bit vulnerable and say we need help. Initially we didn't want to do that. But in a weird way, it has been unbelievably cathartic; it's been healing, even though we are not completely healed, and it has been a blessing."

The machine will cut the cost of treatment dramatically, he said. The shots that Samantha self-injects cost $2,500 a month. With the machine, a baseline of the swelling in the joint can be determined, and doctors can then decide whether the injections are helping, possibly decreasing the number of injections and/or changing the treatment.

As it is now, determining effectiveness can take several weeks.

"How blessed we are that she has this and there is something to treat it. Fifteen years ago, she might have been in a wheelchair in six months. We are so blessed," Diane Perez said.

Even though Samantha faces surgery to break and reset her jaw bones when she stops growing, she seems to be a typical pre-teen who is making adjustments.

She participates in gymnastics and cheerleading, even though she can't lift more than 10 pounds. To continue her passion for painting her nails, she has to have a larger lid for the bottles. Round doorknobs in her home have been replaced with lever-style handles, and her cups and silverware are specially designed so she can keep her thumbs pointed upward.

Rob Perez said he wants Samantha to understand that she can still do anything.

"Sometimes 'I can't' is powerful," he said. "The only thing we are trying to show Sam in this process is no matter what, she still can."

Merlene Davis: (859) 231-3218. Email: mdavis1@herald-leader.com. Twitter: @reportmerle. Blog: Merlenedavis.bloginky.com.

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