'Fragile-boned' children get safe workout, opportunity to relax, in Alyn summer camp

The most pervasive fear for these kids is the risk of falling, and the camp teaches them how to avoid harm.

By JUDY SIEGEL-ITZKOVICH
Children suffering from a rare genetic disease that makes their bones extremely brittle have been playing soccer, swimming, doing physiotherapy and pursuing other activities - thanks to an innovative summer camp organized by Jerusalem's Alyn Pediatric and Adolescent Rehabilitation Center. Nine Arab children aged five to nine from around the country who suffer from osteogenesis imperfecta (OI), have been participating in the almost two-week camp around Jerusalem. There are about 200 OI children of all ethnic origins around the country, but only Arab children were chosen to participate in this first camp of its kind, in order to facilitate communication and integration. More camps are being planned for Jewish children next year. The hospital has also organized summer camps for some of the 500 children in the country born with spina bifida (meaning "split spine"), which results from the incomplete closure of the embryonic neural tube, leading to an incompletely formed spinal cord. Many of these cases could have been prevented had the mother taken folic acid before becoming pregnant and during the weeks after conception. The center also organizes discussions where the children's parents can meet with Alyn social workers and doctors and talk about disease-related issues. Alyn director-general Dr. Shirley Meyer initiated the summer camps, which are offered free to inpatients and day-hospital patients with OI and spina bifida. They have been taken to the Jerusalem Biblical Zoo, Sacher Park and other sites and even allowed to play soccer - their legs protected with special devices to prevent fractures upon impact, said Osnat Arbel, the occupational therapist who coordinated the camp. "Some of the Arab kids know Hebrew, but we provided two Arabic-speaking counsellors so they feel more comfortable. They enjoy the feeling of being together, as they are used to being different than everybody else." Dr. Emanuel Kornitzer of Alyn's rehabilitation department explained that some OI children look like anyone else, except that they are shorter than normal and the whites of their eyes have a bluish tinge. Others, with a more severe degree of disease, suffer from chronic back pain and have malformed bones in their spine and legs. The disease is caused either by the inheritance of a dominant gene from a parent or from a spontaneous mutation that reduces the amount of collagen - a protein that forms connective tissue - in the bones and even the teeth, making them very fragile. Kornitzer noted that a biphosphonate drug named pamidronate, introduced some 15 years ago, makes life much easier for OI patients. It is given by injection from the age of six months for three years and reduces the risk of fractures with no serious side effects. In any case, by their mid-teens, when they stop growing, the bones stabilize and fractures are reduced, allowing them to remove their leg braces and protective devices and to live more normal lives. However, the risk of fracture from even minor physical trauma produces considerable anxiety, especially in children affected by the more serious form of the disease. The most pervasive fear for these children is the risk of falling, said Kornitzer, and the summer camp teaches them how to avoid harming themselves and gives them self-confidence.