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A sister’s love joins in the fight

Juliet Morales helps sister in battle against juvenile rheumatoid arthritis

Posted: May 25, 2012 1:55 a.m.
Updated: May 25, 2012 1:55 a.m.

Juliet, left, and sister Taylor count the nearly $800 raised from Hart High cookie sale fundraiser for the Arthritis Walk.

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It's a struggle for her to get out of bed each morning. She has difficulty brushing her hair and teeth, opening water bottles, and other daily activities people don't think twice about. Her arthritis causes continuous pain in her joints, but the multiple prescriptions she takes still don't dull the pain.

But Taylor McLaughlin, of Stevenson Ranch, isn't your typical arthritis patient. She's only 9.

Taylor McLaughlin
Diagnosed at age 4, Taylor has been living with juvenile rheumatoid arthritis, a condition affecting nearly 500,000 children in the U.S.

It took numerous visits to a variety of doctors until the accurate diagnosis was discovered. There are only 200 pediatric rheumatologists in the U.S.

Taylor travels more than an hour to Children's Hospital Los Angeles about once a month to see her doctor.

Juvenile arthritis limits physical mobility because the joints are not aligned well and don't allow for a full range of motion, said Bracha Shaham, M.D., Taylor's doctor.

Juliet Morales
After watching her sister's daily struggle with juvenile arthritis, Juliet Morales, 17, has taken action to help cure arthritis.

A junior at William S. Hart High School in Newhall, Juliet took the initiative to hold a fundraising bake sale on campus.

With the support of two of her teachers, she has raised more than $800 - and the number continues to grow.

"Juliet thought of baking cookies and selling them at school herself," said her mother, Beth McLaughlin. "We're pleased that the students and her teachers are supporting her effort to help raise funds toward a cure for arthritis."

Juliet and her brother Justin, 14, bring baked goods to school every day to sell. The school's Associated Student Body has even helped to make it a fundraiser.

"A lot of people don't understand how serious arthritis is," Justin said. "They're always a little surprised when we tell them you can get it as a kid."

Arthritis walk
The Arthritis Walk for the Santa Clarita and San Fernando valleys, an annual event hosted by the Arthritis Foundation, helps to raise money for research in the prevention, control, and cure of arthritis.

This year's walk will be held June 3 at Six Flags Magic Mountain in Valencia.

The walk will feature 1-mile and 3-mile non-competitive courses in addition to entertainment by superheroes and Looney Tunes characters.

In addition to other entertainment, there will be vendor booth, and food, said Debbie Martin, development director for the Arthritis Foundation.

The McLaughlins
The McLaughlin family has participated in 10 Arthritis Walks over the years, traveling to Santa Monica and Las Vegas for the events. In May, they participated in a walk held in Santa Barbara.

"We have a group of people, Team Taylor, that comes out with us and supports us," said Beth McLaughlin.

The Arthritis Foundation, which sponsors the walk, also helps raise money for Camp Esperanza, a summer program that operates out of multiple locations nationwide. Last summer was the McLaughlin family's first camp experience.

They stayed at a weekend family camp - then Taylor stayed overnight for five days at Camp Esperanza's facility at The Painted Turtle in Lake Hughes.

"I like being with my friends," said the 9-year-old shyly.

Camp Esperanza allows the children a chance to interact with other kids dealing with the same problems.

Juvenile arthritis can cause physical deformities, particularly in the face, and makes it difficult to interact socially, said Shaham.

"It's the highlight of these kids' summers," said Martin. "It's a wonderful thing we can send these kids to places where they can be with other people like themselves."

Living with arthritis
There's a shortage of pediatric rheumatologists in the United States, said Shaham, who has been treating Taylor since January 2009. The shortage often delays diagnosis and treatment.

"When you treat it early, you can go back to normal functions," Shaham said, "But you need a lot of physical and occupational therapy, constant treatment."

Arthritis causes cartilage, the cushions between your bones, to deteriorate, and as the bones slide against one another, it causes joint pain and stiffness. Muscle strength gets lost and can't be regained because cartilage can't be regrown.

"The important thing to do is to be aware and diagnose it early to prevent irreplaceable losses," Shaham said.

Good days, bad days
On a good day, Taylor is indistinguishable from any other child her age. She's an outgoing, energetic girl who goes to hip-hop dance class every week. And while she does have wrist problems when she tries to brush her hair, "Sometimes, I just don't want to," she said with an impish smile.

But when she has a flare up, she can tire easily, and is often nauseous and has stiff joints. Certain motions just aren't possible. A side effect of her medication is a propensity toward bloody noses, which can happen several times a day.

Treatment for juvenile arthritis is layered, with three different levels of medications. First, an anti-inflammatory is prescribed, similar to ibuprofen, but given in much higher doses. As an immunosuppressive, it changes the activity of the immune system, said Shaham. But in most kids, it's simply not sufficient enough.

Next is a round of Methotrexate, used once weekly. Most people get nauseous, which makes it more difficult for children to take it, she said.

Taylor has been on this for a while, but a recent pharmaceutical shortage means they have to drive down to Children's Hospital each month to get the medicine instead of to the corner pharmacy. Her medical expenses would be about $5,000 each month without her health insurance.

Of the seven different subtypes of juvenile arthritis, Taylor has polyarticular, the second most common. About 40 percent of JRA patients have this subtype, Shaham said. JRA is also the leading cause in child blindness, and adults are at high risk of heart disease, liver disease, and kidney failures because of the high dosages of anti-inflammatory medications. There is less than a 30]-0percent chance that the disease will come under remission by the time patients are in their early 20s.

The Arthritis Walk will be held Sunday, June 3 at Six Flags Magic Mountain. Registration 7:30 a.m. and Walk 9 a.m. Info: www.magicmountainarthritiswalk.org or 323-954-5760.

lifestyles@the-signal.com

 

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