Westlake boy on the move for arthritis cure

[Guest guest]

Westlake boy on the move for arthritis cure

http://www.theacorn.com/news/2009/0604/health_and_wellness/065.html

For two years Caleb Apthorp, 12, of Westlake Village experienced severe pain

in his knees and hips, but his family couldn't figure out why.

They thought it might be from the way his shoes fit or perhaps from playing

soccer. The Lindero Canyon Middle School sixthgrader went through physical

therapy and had a growth removed from his hip, but there was little relief.

After visits to multiple doctors, Caleb received a definitive diagnosis in

March 2008, and it surprised everyone. The young boy had arthritis.

" We had no idea kids had arthritis, " said Caleb's mother, Bari Carrelli.

" Some days he wakes up in the morning and he's stiff and can't move very

well, like an elderly person. "

To keep the disease under control Caleb takes several medications and

receives injections. But he still has days where he misses school because he

wakes up stiff and sore.

" This is a major disease, and if you don't catch it early it's crippling for

life, " Carrelli said.

Caleb has spondyloarthritis, a form of juvenile rheumatoid arthritis.

Arthritis affects about 300,000 children under the age of 16 in the United

States, according to the Arthritis Foundation website.

But Caleb didn't want to be a statistic, his mother said.

" The pain that I had and the thought that other people had it, too, made me

sad, " Caleb said. " I couldn't live with it, and it was terrible. "

Caleb decided to take action to help himself and others. In March he and his

family, including his dad, Apthorp, and his sister , an Agoura

High School sophomore, travelled to Washington, D.C., for an Arthritis

Foundation-sponsored advocacy meeting to lobby Congress for research

funding. Caleb met with U.S. Rep. Henry Waxman (D-Los Angeles), who agreed

to co-sponsor the House of Representatives 1210 bill for research and

outreach. Although it was defeated, the bill will be reintroduced this year

In May Caleb raised more than $1,000 through the annual Arthritis March at

Six Flags Magic Mountain in Valencia. He has also attended the

organization's family conference in Costa Mesa and a summer camp in the San

Bernardino mountains.

" Because of his involvement with the Arthritis Foundation, Caleb's feelings

of pride and accomplishment far outweigh the pain from his arthritis, " said

Carrelli, who will testify in Washington in June about the healthcare

challenges facing families fighting illnesses like arthritis. " We are very

proud of Caleb and his determination to make a difference. "

Caleb may have arthritis all his life or it may go into remission someday.

It is unclear what causes the autoimmune disease, Carrelli said.

" They know it's genetic, but they don't know why it goes fullblown in some

people, " Carrelli said. " Stress or surgery might have triggered it. "

Caleb's teachers have been understanding, she said. Carrelli provided them

with information about Caleb's illness and limitations.

" You want to be respectful of the pain, but you want to encourage him to

push through it because you can't just give up on life, " Carrelli said.

The week Caleb was diagnosed Carrelli was laid off from her job producing

documentaries for TV. It turned out to be a blessing.

" It was meant to be, " Carrelli said. " I've been home and haven't had to

worry about who's going to get him to his doctor appointments. It's allowed

us to become involved. "

Caleb can no longer play contact sports like soccer and baseball, which he

always enjoyed. Instead he puts his energy into other interests, such as

drama, art and music.

" A lot of kids, and adults, too, will look at Caleb and other people with

arthritis and say, 'Well, you look fine,' " Carrelli said. " In some ways it's

easier if you have something that's visible, especially if you're trying to

keep up and not make a big deal out of it. "

Taking action through participation and advocacy has made Caleb feel in

control of his illness, his mother said.

" He doesn't just sit back and take medicine, " Carrelli said. " For anyone who

deals with any kind of illness, I recommend getting involved and becoming an

advocate. It's given him a whole new way to connect with the world. He's

fabulous. "