Young student shows arthritis hits all ages: Bioengineered drug helps athletic girl keep playing

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Fund-raising walk today in Stark

Young student shows arthritis hits all ages

Bioengineered drug helps athletic girl keep playing

By Jewell Cardwell, Beacon Journal columnist Posted Sat, May. 15, 2004

http://www.ohio.com/

Debbie and Jim Luther give thanks daily that their softball-playing

daughter is as agile as she is.

But it's not 13-year-old Aubrey's athletic prowess that motivates the

Luthers to bend their knees and pray.

The Hartville parents are just grateful that her arms and legs work at

all, and without too much pain.

These are the burdens that exist when a child is harnessed with the

weighty diagnosis of juvenile rheumatoid arthritis (JRA).

Aubrey -- one of the honored foot soldiers in the Akron/Canton Arthritis

5K Walk at 10 a.m. today at Stark State College of Technology (6200

Ave. N.W. in Township) -- was diagnosed when she was only

2 years old.

Arthritis affects a staggering 70 million Americans; more than half

are under 65, including 300,000 children such as Aubrey. It is the No. 1

cause of disability in the nation.

Aubrey's mother recalls with absolute clarity the unhinging moment that

led to that unsettling medical opinion.

``We were out for a car ride when Aubrey just started crying

uncontrollably,'' Debbie Luther said. ``She was complaining about pain

at the back of her legs. We knew she hadn't fallen or been hurt.''

Diagnosis

When Aubrey's misery didn't lessen, her baffled and frightened parents

whisked the toddler to an orthopedic doctor.

``He did blood work and found some fluid in the joints. So, he

recommended that we see a rheumatologist,'' Debbie Luther continued.

Dr. Mandel at the Cleveland Clinic found the root of Aubrey's

pain: juvenile rheumatoid arthritis.

``So many things run through your head when you hear something like

that,'' Debbie Luther said.

``We had always thought of arthritis as an old person's disease. So, we

were thinking wheelchair down the road and maybe she wouldn't be able to

walk Then we started doing all sorts of research ourselves. ''

Little Aubrey was placed on steroids, and she did well for a while.

``Then there would be flare-ups when she would be weaned off the

steroids,'' her mother said.

The worst occurred in fourth grade. ``She was sick with some type of

virus, which set off the arthritis extremely bad,'' Debbie Luther

informed. ``Even sheets touching her skin caused awful pain. My husband

had to carry her everywhere because she was in so much pain She was off

school for two months.

`Miracle drug'

``None of the medications -- methotrexate, prednisone or the

anti-inflammatories -- seemed to work,'' Debbie Luther said.

``Then we discovered Enbrel, which has been Aubrey's miracle drug.''

Enbrel is a bioengineered drug that is injected. It is designed to free

a patient's movements and inhibit progression of the disease.

Aubrey -- who receives twice-weekly injections -- said Enbrel has made a

tremendous difference in her life.

```Before I started on it, I couldn't do anything,'' the affable girl

suggested. ``This past year, I was able to finish a whole year of

softball without being sick. And this past year in cheerleading

practice, I started doing tumbling and back flips -- something I never

thought I'd be able to do.''

Even before Enbrel, Aubrey had been as active as possible.

``She's a very determined young lady,'' her mother said. ``She's played

softball since second grade, even though she wasn't able to complete an

entire season until recently. She also made basketball cheerleader at

her school (Lake Middle School). Prior to that, she was Lake Youth

cheerleader for football. And she's just finishing up track: throwing

shot and discus. She's had to work extremely hard.''

Apart from the obvious pain -- which now is manageable -- the major

downside for Aubrey had come from her peers.

``The steroids caused me to be bloated, especially in the face,'' Aubrey

said. ``So, I got teased.''

Even so, Aubrey worked through it and never let it get her down, her

mother said.

``She's always been a real inspiration to us when we're having a bad

day, which never seems quite as bad when we look at her,'' Debbie Luther

said.

Aubrey's other extracurricular activities include swimming, playing alto

saxophone and volunteering for Junior Services, which collects and

delivers food to needy families in the Hartville/Canton area.

And there's this: Aubrey is enrolled in the gifted and talented program,

maintains a 3.8 GPA and writes for the school newspaper.

Another risk of junior rheumatoid arthritis is blindness, so Aubrey is

vigilant about seeing the ophthalmologist twice a year.

Fortunately, her two brothers -- baseball phenoms 11-year-old Jimmy and

8-year-old Nolan -- show no signs of the disease.

For that, the Luthers are forever grateful, too.