Fighting Illness With Love.
| This article is dedicated to|
the memory of Gabriel Tayar
(August 22, 1994-July 15, 2007).
-- Ellen G. Witman
"Your child has cancer."
No parent is every prepared to here these words. Unfortunately, each year in the United States more than 8,500 children under the age of 15 are diagnosed with various forms of the disease. From the moment the diagnosis is confirmed the lives of everyone in the family ---- patient, parents, siblings, grandparents, even extended family and friends --- are altered. The child with cancer enters a frightening, confusing and often painful existence of aggressive treatments, hospital stays and separations from school and friends; the parents move into a world of medical, emotional and financial overload. Siblings, too, struggle to understand what is happening and to deal with their own sense of helplessness.
A Personal Connection
On July 15, 2007, Gabriel Tayar z"l, a schoolmate of my son Jonathan, lost his battle with cancer. Gabriel was almost 13 years old, an age where by all rights a boy should be enjoying his final preparations for his Bar Mitzvah.
On Shavuot this year, Gabe had to be hospitalized. When Jonathan and I visited Gabe and his family at CHOP, Gabe's mother, Barbara Lichtman, told us about Chai Lifeline and the work that they do. They also directed us to the well equipped kosher pantry provided by Chai Lifeline.
In a letter to me, Barbara told me more about the wonderful services Chai Lifeline provides:
"Chai Lifeline sponsored a trip to a Phillies game for sick kids and their families which incorporated meeting the Phillies. Because of the seriousness of Gabe's condition, Rabbi Fried told me that night that Gabe was their #1 priority and if there was anything the organization can do, including arranging for him to go to Camp Simcha, it would be taken care of. Our two last Shabbat dinners together were supplied by them and Rabbi Fried's shiva call along with the entire community here was very much appreciated.
"Chai Lifeline is a wonderful organization that provides so many wonderful services to a population that is so needy in such a complex way and does it all in such a
haimesha style. They really are extraordinary."
-- Daniel E. Loeb, publisher
When a pediatric cancer diagnosis turns life upside down for a Jewish family, the family can turn to Chai Lifeline. This international, nonprofit organization offers a remarkable array of programs and services to assist every member of a family with a seriously ill child. All services are free of charge and are available from the moment of diagnosis for as long as they are needed. Chai Lifeline staff and volunteers help patients and their families face the challenges of medical protocols, disruptions in work, social and family life, emotional upheavals, and a maze of insurance and financial demands. Whether the need is for a professional case manager to coordinate caring for the child at home, or a volunteer to bring a kosher meal to the hospital, Chai Lifeline will provide.
Chai Lifeline’s Beginning
Chai Lifeline began in 1986 as a summer camp program for children with cancer. Rabbi Simcha Scholar created Camp Simcha in Port Jervis, New York in order to give Jewish children with cancer a fun-filled experience in a loving, Jewish environment that would allow them to feel like normal kids even as the trained, attentive staff continued essential treatments, cooked Kosher meals according to individual nutritional plans, and tailored activities to the special needs and interests of each camper. For parents and siblings, Camp Simcha offered an essential respite for several weeks during which they could focus on themselves and each other, resting and renewing their spirits, knowing that the staff at Camp Simcha would more than meet their loved one’s needs.
The response to Camp Simcha was overwhelming. Rabbi Scholar was inundated with applications from across the country and around the world. Requests to attend camp also arrived from parents of children with other life-threatening or serious chronic diseases such as Cystic Fibrosis, Crohn’s Disease, neurofibromatosis, familial dysautonomia (especially prevalent among Jews), and other genetic diseases. Inquiries about other services came as well. Rabbi Scholar quickly understood that families with a seriously ill child need assistance well beyond a few weeks of summer camp; they need all kinds of help all year round. The Rabbi and his staff identified a myriad of services that might ease the stress on families with sick children, everything from running errands to preparing meals, from providing respite care to simple acts of friendship like sitting with an anxious parent at the hospital.
Within a few years, Chai Lifeline evolved into the multifaceted agency it is today with an extensive network of services and programs designed to help every member of the family cope with the stresses and crises that are inevitable when a child has cancer or other life-threatening illnesses. There are Chai Family Centers, Chai Telephone Support Groups, Crisis Intervention services, wish granting programs, insurance counselors, and financial assistance in addition to special retreats for children with serious illnesses and their families, sibling retreats and a Bereavement Weekend for parents or siblings.
The national budget for Chai Lifeline was $13 million in 2005. Foundation grants and charitable contributions fully fund the agency allowing families to avail themselves of the services and programs at no cost. The work of the salaried staff is supplemented by hundreds of trained volunteers who work with families for weeks, months or years. They offer support and encouragement during treatments, celebrate remissions and cures, and provide counseling and bereavement services when a fight is lost.
New Jersey Regional Office
As Chai Lifeline’s services grew, so did the demand. Jewish families across the country, as well as some in Europe and Israel, called seeking assistance. In order to provide personalized, community-based services to each family additional offices were established. Today, there are five regional offices (Greater New York, Southeast, Midwest, West Coast, and New Jersey) and three international affiliates (London, Israel, and Canada).
The New Jersey regional office serves New Jersey, Pennsylvania and Delaware. Importantly, the region includes Philadelphia and the renowned Children’s Hospital where many sick children from the tri-state area receive state-of-the-art medical treatment. Chai Lifeline’s New Jersey office focuses significant attention on the needs these children and their families. One example is Chai House, established seven years ago to offer Jewish families a kosher place to stay just a short distance from Children’s Hospital. Three families can reside there at any one time.
Chai Lifeline New Jersey is currently assisting about 300 families. Most have a child in treatment or post-treatment, but some are families that require bereavement support or long-term services. Roughly one-third of the children have a cancer diagnosis; two-thirds have serious, chronic illnesses.
Overseeing all of the activities in the New Jersey Region is Rabbi Sruli Fried, Director of Programs and Services. His extensive experience with Chai Lifeline began when he volunteered at the agency’s main office in New York as an undergraduate. While pursuing an MSW degree at Yeshiva University’s Wurzweiler School of Social Work, he did an internship as a case manager for Chai Lifeline. Upon graduation, Rabbi Fried became Director of Hospital Services in the New Jersey Regional office in Lakewood, New Jersey. Two years ago he accepted his current position. "I have always had a passion to do Chesed, to do Tzedakah, especially with children," the Rabbi explained. Like many people who devote themselves to a particular cause or organization, Rabbi Fried had a personal experience that drew him to Chai Lifeline: a friend’s child suffered from kidney failure and he often helped out with his care and assisted the family members in any way he could.
Rabbi Fried is extremely proud of the 250 volunteers in the New Jersey region. Volunteers visit young patients in the hospital to cheer them up, provide academic tutoring so they can keep up with their peers, and throw Jewish holiday parties to bring joy to the sick children, their siblings, parents and friends. Volunteers also assist parents and siblings by providing rides to and from the hospital, medical advocacy in the hospital, respite care, telephone support, and kosher meal delivery. Insurance support specialists offer a service that lifts a huge burden from families: they take all the medical bills, fill out the insurance forms, advocate for the families, and work with insurance companies to get the maximum payment or reimbursement. Some volunteers even spend weekends staying with families that need extra help caring for their child at home.
The Rabbi explained that Chai Lifeline volunteers of all ages and backgrounds "…go beyond programs and services...[They] really care and will go the extra mile." For instance, one volunteer worked with a young patient who was afraid of the MRI machine and would not lie still for the procedure. He told the volunteer that he wanted a particular CD to listen to while the MRI was taken. The volunteer drove twenty miles to a store that had the CD, bought it, and returned to the hospital so the patient could have the music that would comfort him.
After 20 summers of fun and caring, camp remains the heart of Chai Lifeline. Camp Simcha continues to offer two-week summer sessions for Jewish children with cancer (one session for boys, one for girls). In addition, Camp Simcha Special has been added to provide a similar opportunity for boys and girls dealing with serious, chronic ailments. On average 100 to 120 campers attend each session enjoying fresh air, new activities and the friendship of other campers. Most importantly, campers reside in a beautiful, nurturing environment where they can just be themselves. It doesn’t matter if a child’s hair has fallen out, if she is wheelchair bound, or if he must wear a mask to help him breathe. Everyone at Camp Simcha and Camp Simcha Special understands.
The key to Camp Simcha’s and Camp Simcha Special’s success is the loving, professional care the children receive. Between 250 and 300 trained staff members work in each session; the ratio of counselors to kids is one-to-one or one-to-two, depending on the needs of the campers. Medical teams, nutritionists, therapists and other health professions are on-site. They work with each child’s physician to design an individualized plan for the two-week session. The camp has a fully equipped ambulance in case a child has to be transported to the nearest hospital. A medical helicopter is always on call just a few minutes away.
But for the campers, it is the passionate, dedicated young counselors who make Camp Simcha and Camp Simcha Special such a wonderful place to be. Applicants for counselor positions are carefully screened. They must be at least 18 years of age and have graduated high school. Previous volunteer experience is required and references are checked. The most important characteristic, however, is a warm, caring personality along with a demonstrated commitment to helping others. Those who are selected must attend a comprehensive training program on caring for children with cancer (for Camp Simcha) or children with serious, chronic illnesses (for Camp Simcha Special).
Rabbi Fried calls these young people "truly amazing." He believes those who worry about the values of young Jews today need only talk to the ones who apply to work at the camps. "The compassion and the interest in service, in Tzedakah, are extraordinary. Our counselors are volunteers; they are not paid. Yet we have a waiting list of hundreds of young people who want to be counselors at our camps." Among the applicants are Orthodox, Conservative, Reform, Reconstructionist and secular Jews from all over the U.S. and around the world.
Campers and counselors form a close and enduring bond during the weeks in Port Jervis. Many stay in touch and visit each other for years. Former counselors have formed an alumni group so that they can continue to see each other and stay connected with the camps and campers. For everyone involved with Camp Simcha and Camp Simcha Special the experience is life-altering. Camp is fun. Camp is friends. Camp is freedom.
More About Chai Lifeline
Chai Lifeline is a resource that is true to its name. It is a lifeline for hundreds of families fighting for the lives of their children.
There are 35 different programs under the categories of Children’s Programs, Family Services, Community Services, Special Funds and Initiatives, and Summer Camp.
For more information on any of their services to support their good work, or to find out how Chai Lifeline can assist your family, visit their
website or call 1-877-CHAI-LIFE. Locally, contact Rabbi Sruli Fried, Regional Director of Chai Lifeline at 732-719-1700 x704 or
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