Physical Medicine
& Rehabilitation

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Thursday, March 27, 1997

Health: Guarding The Soul

(March 16) Rochele lies on a thick foam mattress surrounded by toys and waits for her turn with the physiotherapist. The only things that seem to move in this four-year-old with cerebral palsy are her eyes: her pupils dart constantly from one side to another, as if they were trying to escape from a body that doesn't work properly.

The sweet-looking child is one of 80 aged one to 13 who are being cared for at Tikvah Layeled, a CP rehabilitation and special-education center in Jerusalem's Bayit Vegan quarter. It's the only such facility in the capital for children with CP from the haredi community - which for years tended to virtually hide such children in closets for fear that their mere existence would harm their siblings' chances for a good match for marriage.

Today, the problems and needs of physically and even mentally disabled children in the haredi community have emerged, and families stricken by such disorders have set up voluntary organizations to meet their needs.


Fifteen years ago, it happened to Zvi Braitstein and his wife Sheindele. They had two healthy children, and then triplets were born: two healthy girls and one boy, Yoel, who was different. Zvi, a 13th-generation Jerusalemite and the son of the long-time secretary of the Eda Haredit, made his living producing leather housings for tefillin, and he had never even heard of cerebral palsy. He soon learned that the condition strikes 0.7% of all babies, affects over 10,000 Israelis, and is caused by injury to the central nervous system during pregnancy, delivery or soon after.

When Yoel's problem was diagnosed at the age of two, Zvi took him and the whole family to Brooklyn, where he was put in touch with another tefillin-maker who had a son with CP and who ran a rehabilitation institute for such children.

"I met numerous Israeli families like ours who left the country to get help for their children in a religious atmosphere," recalls Zvi, a Hassid who wears ritual fringes outside his shirt and black trousers tucked into long black socks - yet his openness and familiarity with medical conditions are incongruously modern.


"I thought to myself: if I can take an inanimate piece of animal skin and mold it into boxes to hold tefillin parchment, then one could take a CP child, who has a soul, and help make him better."

Although Zvi found work in his vocation in New York, the Braitsteins wanted to return to Jerusalem, but could do so only if they had a suitable place for treating Yoel. He was enrolled in the rehabilitative kindergarten directed by the late pediatric neurologist Prof. Naomi Amir, and progressed neurologically. But the parents felt uncomfortable that their son, who is a bright boy, didn't get the type of religious training they were accustomed to.

"There are some 200 severely disabled Jewish children, some of them haredim, under care of nuns in Ein Kerem. Their parents may feel they have no alternative, but we wanted our son to live with us, and we needed help.


"We dreamed of setting up a CP clinic; we never dreamed of being able to develop the facilities we have today," continues Braitstein.

Tikvah Layeled's main facility is Neveh Zvi, a five-story rented apartment building at 16 Rehov Sha'are Torah in Jerusalem. CP youngsters - not only haredim but also from non-religious and modern Orthodox families - are bused in, and spend more than eight hours a day with a staff of professional teachers and physical and occupational therapists. There are computers, special therapeutic equipment (including customized boots that hold the feet straight to stretch spastic hamstrings), electric wheelchairs and catered meals for the children, whose parents pay a nominal NIS 100 to NIS 150 a month for care. The rest is covered by contributions from the Jerusalem Municipality, the ministries of Education and Labor and Social Affairs, and by private donors.

One of the most moving experiences, recalls Braitstein, was going into the building recently and seeing the whole staff and children overcome with emotion. "There were tears in their eyes, and at first, I was worried that something bad had happened. But I could see they were happy. They told me that one four-year-old boy, who had been undergoing physical therapy for 18 months, had taken his first step and begun to walk. This was just one reward for hard work."


Marvin Samuels, a New York philanthropist, serves as president of the organization, and Canadian businessman Albert Reichman is a member of the board. Esther Wolf heads the Israeli women's committee that helps support the organization, while a distinguished medical board includes senior experts in the field, including Dr. Paul Jordan of New York Hospital, Dr. Warwick Peacock of the University of California at Los Angeles, Dr. Fred Epstein of New York University, and Profs. David Segal, Yehuda Shapira and Ilan Arad of the Hadassah-University Hospitals in Jerusalem.

Segal, who heads the orthopedics department at the Ein Kerem hospital, declares that he can "say only good things about Tikvah Layeled. Ten years ago, the Braitsteins consulted me and explained the special needs of haredi children with CP. No matter how much the family love them, CP children need a lot of help, and their progress is very slow. It's not like an orthopedic problem that you operate on and solve. Recovery is not complete.

"For resources, staff size and facilities, no institution dealing with the physically handicapped can compete with Jerusalem's Alyn Hospital, which is one of the best in the world. But for those haredi families that wanted a framework of their own, any organization that provides professional, high-level assistance in a way that makes parents comfortable is a boon."


In addition to Neveh Zvi, Tikvah Layeled also supports the local production of children's wheelchairs and therapeutic workstations for free distribution to hospitals, institutions and private families. It also brings foreign medical experts to Israel to train local doctors in the most advanced methods and operations, sponsors symposia, provides personal family counseling, organizes CP parent support groups and operates a broad volunteer program that directly helps parents function on a daily basis.

Braitstein, now the father of 13 living in the Ramot quarter of Jerusalem, worries about what will happen when the youngsters reach the age of 18.

"We will add extra classrooms as they get older, but when they reach adulthood, someone else will have to establish a place for them."

As it is, Tikvah Layeled has a long waiting list, and could double or triple the number of youngsters if it had the facilities. It only now received a donation to install an elevator; until it is built, parents and therapists have to carry them up the stairs.

"We dream of having a building of our own that's physically suited to the needs of the children," Braitstein says.

"The conditions are not ideal," says physical therapist Yocheved Azulai. "But we manage with what we have. Progress for a CP child isn't measured in terms of passing exams. We have a feeling of satisfaction when we know we've done something that makes the child feel good."


by JUDY SIEGEL, Jerusalem Post.

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