Hayley Leib has been in and out of the hospital since she was 12. Now 21, her doctors have diagnosed her with mitochondrial disease, a disorder affecting energy and metabolism. Illness and long hospital stays can put untold pressure on any family, but the Leibs have had some help from an unexpected source.
Enter Chai Lifeline, an international nonprofit organization founded in 1986 to help Jewish kids — and their families — suffering from cancer and other chronic illnesses, as well as Jewish genetic diseases.
"We've been in the hospital over Passover, Yom Kippur, Rosh Hashanah, and they've always been there for us," said Hayley's mother, Randy, who described being by her side through much of the ongoing medical ordeal, and last week even helped Hayley celebrate a birthday at the Children's Hospital of Philadelphia.
Whether it's bringing kosher meals to patients at CHOP, giving toys to sick kids to raise their spirits, providing food for the family back at home or just a friendly shoulder to lean on, Chai Lifeline serves about 500 families out of its New Jersey regional office, which covers the Philadelphia area.
"They can come in and visit your kids so you can take a walk or just sit with them, if you don't want them to be alone," said Randy Leib, whose husband is the rabbi at Old York Road Temple-Beth Am in Abington. "They really can't do enough to help."
The group will serve any Jewish family, and there is no age cut-off, but the organization is primarily a pediatric support service, said Rabbi Sruli Fried, director of programs and services for the New Jersey office.
It even offers camps, based in New York, where the kids can interact with their peers in similar straits outside of the hospital, while still under the supervision of medical professionals.
Max Levine passed away from neuroblastoma last year at the age of 17, but to hear his mother tell it, some of the best times of his life were spent at Chai Lifeline's Camp Simcha in Glen Spey, N.Y.
"At camp, he wasn't a sick kid; at camp, he was just a kid," said Max's mother, Sue K. Levine of Cherry Hill, N.J.
She recalled that her son was initially hesitant to attend the camp when he was 11, but gave it a shot with the understanding that he would try it for a few days, and if he didn't like it, he could come home. He loved it, she recalled, and later on, when his cancer relapsed, she said that "his first question was, 'Can I go back to Camp Simcha?' and his second question was 'Am I going to die?' "
'Kosher McDonald House'
Only a few blocks away from CHOP, Chai Lifeline has an apartment available for Jewish families who need it.
Located on Sansom Street in University City, the brownstone building's top-floor residence is a homey space, with three bedrooms, two bathrooms, in-house laundry facilities, a batch of toys and games for kids, and a kitchen fully stocked with a variety of kosher foods.
Welcome to the Chai House — "Our very own kosher Ronald McDonald House," as Fried described it. The apartment can hold as many as three families at a time, and in the last year, hosted more than 375 overnight stays.
While neither the Leibs nor Levines have utilized the facility because they live relatively close to CHOP, it's meant to be a home away from home for those coming from further away, not to mention for observant Jews who can't travel on Shabbat.
All of that comes at significant expense to the organization — around $5,000 a month, which covers rent, food, utilities and daily cleaning service. While individuals may sponsor the cost of the apartment, much of those fees are covered by the New Jersey office's annual operating budget of just under $1 million.
According to Fried, services such as the camps are funded by the national office, but the regional branch is responsible for covering the cost of things like the Chai House and events that the local kids participate in, such as an upcoming trip to a Philadelphia 76ers game.
The funds for all that, explained Fried, come from "all Jewish philanthropy, all Jewish fundraising," including foundations and private individuals. The New Jersey branch does not receive financial support from any area Jewish federations, though Fried said that he was "always looking to build consortiums."
Fried said the organization, "would never be able to do what we do without our volunteers," whom he called "the soldiers of Chai Lifeline."
Volunteerism with the organization has risen 10 percent in the last year, he said — everything from people giving time and money to donating services like rides to the hospital or just being around to help out.
Among those volunteer services are insurance advocates, who help the families of patients navigate the often complex world of medical billing.
For Sue K. Levine, that enabled her to hand off mountains of complicated insurance forms and bills to a professional who sorted through them all, made phone calls, negotiated where necessary, and then told Levine who to pay and how much.
"I could not make heads nor tails of the insurance," she said, adding that having that assistance "took such a huge burden off of me."
Another element that made a difference to the two families was that Chai Lifeline not only takes care of the patient, but is careful to make sure that the needs of siblings and the rest of the family aren't ignored.
"It's an amazing mitzvah that they perform, and they don't want anything in return," said Randy Leib.
"It doesn't matter where you're from, where you belong or even if you belong," she said, adding, "I think the rest of the Jewish world has a lot to learn from them, frankly."