2009-12-11 / Community

Despite rare disease, boy still thinks of others

By Michelle Knight knight@theacorn.com

VERY GIVING—The Castro family, from left, Paige, 6, Dan and Corey, 8, sit in the living room of their Camarillo home earlier this week surrounded by a few of the toys they’ve collected for the Ventura County Medical Center pediatric oncology treatment center. Corey has a rare bone disease called Gorham’s disease and visits the center for treatment. The young boy decided he wanted to collect toys for other children who visit the center and began a campaign to collect donations for the young Ventura County patients being treated for cancer. WENDY PIERRO/Acorn Newspapers VERY GIVING—The Castro family, from left, Paige, 6, Dan and Corey, 8, sit in the living room of their Camarillo home earlier this week surrounded by a few of the toys they’ve collected for the Ventura County Medical Center pediatric oncology treatment center. Corey has a rare bone disease called Gorham’s disease and visits the center for treatment. The young boy decided he wanted to collect toys for other children who visit the center and began a campaign to collect donations for the young Ventura County patients being treated for cancer. WENDY PIERRO/Acorn Newspapers An 8-year-old Camarillo boy who faces a rare and understudied illness is working with his family to brighten the holidays for other ailing children.

Through Tues., Dec. 15, Corey Castro; his 6-year-old sister, Paige; and their father, Dan Castro, are collecting toys from friends, family and the community for sick children who receive treatment at the Ventura County Medical Center’s pediatric oncology and hematology clinic in Ventura.

Corey, a boy with warm brown eyes and a quick smile punctuated by dimples, said his motive is simple.

“They deserve something for Christmas, too,” he said last Friday, one of the rare days that pain from his illness had caused him to miss school.

In September 2008, doctors diagnosed Corey with a rare bone condition called Gorham’s disease.

It’s estimated that some 200 people worldwide have what the Lymphangiomatosis & Gorham’s Disease Alliance describes as a spontaneous, progressive and potentially catastrophic disorder that leads to bone destruction. The disease is poorly understood, according to the alliance’s website.

Because of the disease, Corey has a tumor that runs from his left thigh through his pelvis and hip to five ribs, his spine and spleen. Because the tumor is so widespread and connected to extensive blood vessels, surgery isn’t an option. Corey could bleed to death if doctors try to remove it, Castro said. And the disease itself would become life-threatening if the tumor reaches Corey’s lungs.

Corey receives nightly injections of interferon to keep the disease from progressing. He also gets daily doses of pain medications and monthly injections of pamidronate, a bisphosphonate that strengthens bone and slows down its disintegration.

Gorham’s disease is so rare that Corey’s prognosis is undetermined, his father said.

Nonetheless, Corey wants to brighten the day of other young patients with life-threatening illnesses. The toy drive is his second for clinic patients.

Last spring, Corey told his father something had to be done about the meager number and dismal variety of toys in the chest at the Ventura pediatric clinic. The Castros called on friends throughout Southern California to help and they collected $3,000 worth of toys for the clinic.

Corey, a third-grader at Tierra Linda Elementary, wasn’t content with that. He wanted the sick children at the clinic and their siblings to have toys for Christmas, and so began the second toy drive.

Corey said he can tell from the clothes his fellow patients wear that most come from poor families. He said most of the children at the clinic are sicker than he is: Some have to come to the clinic more often for treatment, while others are violently ill or without any hair due to their medication.

The clinic reportedly treats more than 100 children with cancer.

Dan Castro said despite Corey’s illness, his family is fortunate in many ways. Through his employer he has flexible and substantial healthcare insurance that covers Corey’s treatments and allows him to divide his monthly treatments between the Ventura oncology clinic and Childrens Hospital Los Angeles.

Although Corey can no longer play soccer or baseball because he can’t afford to break a bone, he remains active. A swimmer since age 4, Corey takes to the water more often these days and is learning to play the guitar.

“If we could just give back, that’s the whole thing,” Castro said, sitting in the living room of his home, a stack of 30 or so wrapped and unwrapped donated toys nearby. “We’re not the only ones out there looking for, for . . .”

“Cures,” Corey interjected.

Corey said he saw children at the Los Angeles hospital who are so ill and vulnerable they have to wear face masks.

“It was so sad,” he said.

“How many kids can you see in wheelchairs before you start welling up?” his father said.

Corey said he counted six the last time he was there.

“It’s an eye-opener—you count your blessings,” Castro said.

Corey and Paige live every other week with their mother and the rest of the time with Castro in a modest Mission Oaks home. Castro said he’s not rich but is thankful to have a good job with healthcare benefits and loving friends.

Recently, members of the Foo Fighters, Corey’s favorite band, heard from a friend of a friend about Corey’s illness and gave him autographed memorabilia, Castro said.

“We’re so lucky; that’s why we give back,” he said.

To donate new toys to Corey’s cause, e-mail Castro at dannycast@aol.com.

The Castros plan to hand out the donated toys to patients at the pediatric oncology and hematology clinic in Ventura on Tues., Dec. 22.

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