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Thursday, August 25, 2011 | return to: news & features, local


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Medical challenges are no match for 150 ‘kids of courage’

by renee ghert-zand, correspondent

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Festive balloons and round tables with colorful covers decorated the outdoor courtyard at the Oshman Family JCC in Palo Alto. Buffet tables were piled high with barbecue-style food, and others overflowed with candy — from Red Vines to Lemonheads to giant lollipops. Adrenalin-pumping pop music punctuated the lively environment.

It was a typical JCC kids’ party, and yet it wasn’t.

Rabbi David Spira raises a Havdallah candle at the Westin San Francisco Airport.
Rabbi David Spira raises a Havdallah candle at the Westin San Francisco Airport.
Over half of the guests were in wheelchairs, and several were on ventilators. Some sported bald heads, while others were missing limbs. One boy was born without a face. Each was attended by at least one specially trained counselor. Some had two or three chaperones.

The group of 150 young visitors — with 50 complicated medical conditions, chronic and life-shortening diseases — came from all over the world for a weeklong, whirlwind Bay Area tour with Kids of Courage, a N.Y.-based not-for-profit organization dedicated to improving the lives of children and young adults with serious illness and disabilities.

Accompanied by 250 volunteer counselors and medical staff, the youths experienced the rare opportunity to live it up far away from home after flying to San Francisco from 16 locations, including Israel, Canada and England.

The Aug. 21 dinner at the JCC was just one stop. The young people, from age 5 up into their early 20s, also visited Alcatraz, the Exploratorium, Six Flags Discovery Kingdom in Vallejo, Great America in Santa Clara, Raging Waters in San Jose, the Santa Cruz Beach Boardwalk and an Oakland A’s game.

In addition to sponsoring a big summer trip (previous destinations have been Los Angeles and Orlando, Fla.), the volunteer-based Kids of Courage hosts smaller get-togethers throughout the year, such as Shabbatons, Super Bowl parties and ski weekends. Families also use the organization for expert advice and assistance.

Bringing the young people to the Bay Area and taking care of them for a week of sightseeing and fun-filled activities was “very complicated logistically and medically,” said Kids of Courage co-founder and director Ari Adlerstein. “But we handle it, in part, by being very technologically savvy.”

Adlerstein, 27, said information about each child was on iPads carried by the medical staff, which included three physicians, four paramedics and 12 nurses. “Our response time to any medical emergency is under one minute,” he said.

The group traveled in a caravan that included a medical-equipment truck and an ambulance, in addition to passenger buses and a kosher catering truck. All the meals — breakfast, lunch and dinner, more than 400 meals a day — were kashered by Vaad Hakashrus of Northern California, according to Rabbi Levy Zirkind, who doubles as executive director of Chabad of Fresno. He said many businesses and organizations — local and national — donated goods and services to help the dream trip come true.

Kids of Courage medical director Dr. Stuart Ditchek, a high-risk pediatrician, and CEO Howard Kafka made advance visits to scout out conditions at sightseeing locations, make special lodging arrangements and confirm a cooperative agreement with UCSF Benioff Children’s Hospital. Dr. Robert Bocian, a Stanford University and Palo Alto Medical Foundation–affiliated allergist-immunologist, is on the organization’s leadership team, as well.

Kids of Courage also has a close working relationship with the Transportation Security Administra-tion and Continental Airlines, allowing for the smooth passage of the young people, their medical equipment and medication.

“See the purple backpack that woman is wearing?” Ditchek asked as he pointed to one of the nurses. “Kids and counselors can identify the nurses by their purple backpacks, and each nurse carries the medicines for a specific group of kids.” The nurses administered 1,250 doses of medicine a day while on the trip. “That’s twice the amount that is administered in an average children’s hospital over the course of 24 hours,” Ditchek said.

The goal, he said, was to keep the kids out of the hospital by taking care of them on the go. A temporary hospital suite also was set up in the Westin San Francisco Airport in Millbrae, where they stayed.

The group arrived Aug. 16. By Aug. 21, one girl had come down with pneumonia, a boy broke his foot, several kids had hypertensive episodes, and one child’s back-up ventilator failed. But everyone stayed calm and the professionals took care of the kids.

At the JCC, it was clear the kids and counselors were having a raucously good time, dancing to the pounding music and watching an acrobatic basketball demonstration by the TNT Dunk Squad. They focused on fun and left any worries about medical issues and the trip’s $850,000 price tag (covered by charitable donations) to the adults.

Morgan Asinowski, a 15-year-old from Montreal with familial dysautonomia, was accompanied by 22-year-old counselor Ari Bocian of Los Altos. After reviewing the week’s itinerary, Asinowski declared that he enjoyed seeing the circus at HP Pavilion best.

Karen Horowitz, 21, who has cerebral palsy, couldn’t decide on her favorite part of the trip. “I liked the whole thing,” the Highland Park, N.J., resident said, with translation help from Ally Levy, 21, of Queens, N.Y., one of her two counselors.

While diminutive Hudi Aryeh, a 21-year-old with a genetic muscular-skeletal disease, was on stage expressing how close she felt to her Kids of Courage “family,” Levy and Alana Genuth, 20, from West Hempstead, N.Y., shared what the trip has meant to them.

Both have worked with special-needs children before but found the summer experience uniquely challenging and fulfilling.

Genuth admitted it had been “emotionally hard sometimes” as she negotiated how to help Horowitz while respecting her needs and wishes.  “It’s been a lesson in taking cues from someone else and being selfless,” she reflected.

For Levy, “It’s great to be able to give someone else an amazing time and to look at them for who they are,” she said, “and not the disease they have.”


For more information on Kids of Courage, visit http://www.kidsoc.org.


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