Jerusalem’s Alyn Hospital recently discussed at its annual conference a variety of modern ways to improve the quality of life of disabled young people.
By JUDY SIEGEL-ITZKOVICHUpdated: DECEMBER 3, 2017 09:41THE MOST modern wheelchairs are available for children who can even maneuver them with eye movements or joysticks, but robots and virtual reality have joined them.(photo credit: JUDY SIEGEL-ITZKOVICH)
Rehabilitation of disabled children and teens no longer involves just training in the use of wheelchairs and providing prostheses to replace missing limbs. Ever-advancing technology has added robots, virtual reality, video screens and other assisting devices and ways to improve the youngsters’ quality of life and family cohesion. There are even (highly expensive) drugs that significantly ameliorate diseases that used to be considered hopeless. One powerhouse behind this revolution is Jerusalem’s ALYN Hospital, a national and comprehensive rehabilitation center for physically challenged and disabled children, adolescents and young adults.The nonprofit facility, which treats all young patients, regardless of religious belief, nationality or ethnic background, was founded in 1932 by American orthopedist Dr. Henry Keller, who dedicated his life to such children. Working out of an old re-purposed monastery in the capital’s Katamon neighborhood, the medical staff cared for children disabled in the polio epidemic that spread through Israel and the rest of the world in the 1940s and 1950s. ALYN served as a treatment center, residence and school for 200 young patients.In 1971, the voluntary organization was able to build the impressive Woldenberg Family Hospital complex in Jerusalem’s Kiryat Hayovel neighborhood to serve inpatients and outpatients.Today, it is one of the world’s leading hospitals specializing in the active and intensive rehabilitation of children who have a broad range of physical disabilities caused not only by various congenital and progressive muscle, nerve and bone diseases, but also feeding disorders, severe respiratory problems, road and home accidents, terrorist attacks and severe burns. Patients who underwent orthopedic operations and neurosurgery also recover and are rehabilitated at ALYN.The center includes a pre-school daycare center for children aged six months to three years, kindergartens, an after-school integration program and school classes. It provides services including occupational therapy, physiotherapy, hydrotherapy, speech therapy and psychological counseling in addition to support by medical specialists and social workers.Its director-general since 2011, Dr. Maurit Beeri recently opened ALYN’s Third Annual Conference on Rehabilitation at the capital’s Crowne Plaza Hotel. An accompanying exhibition displayed a large variety of equipment available for disabled youngsters from wheelchairs to electronic devices.Beeri, who graduated from the Hebrew University Medical Faculty and trained as a pediatrician at the Hadassah University Medical Center in Jerusalem, had never heard about ALYN until, as a medical resident, she was sent to work there for a few months. She saw there that children in wheelchairs could be taught to walk.“I went and felt in love with it. It was a big discovery for me. If you want to create a real change in the life of a child, this is the place you should be.”Health, she said at the conference attended by some 200 doctors, nurses, physiotherapists, occupational therapists and other, “is not just the absence of disease. It is to grow and develop, to enjoy well-being. Over a billion people in the world – one in seven – suffer from some type of disability. They have three times the risk of the non-disabled to be hurt in the health system, and half lack accessibility to a decent health system.”While 250 million people around the globe need eyeglasses and don’t have them and many disabled people lack wheelchairs and other basic equipment, humanity is still much better off today than 200 years ago, said Beeri. Medical technology is developing at a rapid pace – faster than the health system does, so not all get the rehabilitation they need.Over 17% of Israelis have some kind of physical disability, but today’s Israeli medical students “don’t hear the word ‘rehabilitation.’ They aren’t exposed to it in their studies.They are not told what physiotherapists, occupational therapists, speech pathologists and audiologists do.” Child rehabilitation here is nevertheless more advanced than in many countries, she added, but even so, many significant things are lacking.”Only recently did the Health Ministry open a rehabilitation division (headed by Dr. Tsaki Ziv-Ner) to coordinate such functions. “The future is very promising. There is more awareness of the rights of disabled; the problem is in the details. Everyone has the right to live with honor and as much independence as they can.”DR. KEREN Politi, a pediatric neurologist at ALYN, told the participants that only a few decades ago, there was little to do to help children. “But thanks to genetics, we can give treatments, prevent problems and improve their quality of life – even with spinal muscular atrophy (SMA, which affects about 80 Israeli children) and Duchenne muscular dystrophy.“We can influence gene regulation. We can give treatment with medical cannabis or with blood from the umbilical cord,” she said. “We can insert healthy genes into sick cells using exon skipping [a form of RNA splicing used to cause cells to “skip” over faulty or misaligned sections of genetic code, creating a shorter but still functional protein].”A new drug approved by the US Food and Drug Administration named Spinraza that costs NIS 2 million a year per patient can help SMA kids hold up their head better, roll over, crawl and even stand. If the child is treated within 13 weeks of diagnosis, said Politi, they do much better. But covering the bill for all SMA children would gobble up a third of the annual increase to the basket of health services.“We have no idea what problems Spiranza could cause later in life,” Politi said, giving leukemia as a possible adverse effect. ''Another drug, in an earlier stage of development, would be in pill form and threaten the sales of Spinraza if it proves just as effective, but there is as yet no evidence of longterm benefits.”Medical cannabis for children is controversial.“There are three types, and they have 60 different chemicals. Cannabis was used even in the 1850s for headaches and seizures, but its medical use declined as drug companies [falsely] claimed it was addictive and caused violence and psychosis. In the last 20 years, however, it has been brought back and used for numerous medical purposes in all ages.”Every large Israeli pediatrics department tries cannabis oil on some children. “At ALYN,” said Politi, many parents want it for painful spasms and other things, but I dispense it carefully, not for children with normal cognition.”Umbilical cord blood is being used experimentally to turn regular cells from the bone marrow into stem cells that can produce growth factors and have an anti-inflammatory effect. There is a group at Duke University in North Carolina that is looking at use of umbilical cord blood on cerebral palsy, but it has not brought about a big change.”One of her young patients who suffered damage due to separation of her mother’s placenta got umbilical cord blood, but it didn’t help with the seizures. But medical cannabis was tried and he was able to sleep at night for the first time without crying.PROF. TAMAR Weiss, a University of Haifa expert in the use of technology for rehabilitation, noted that there “is huge and accelerating growth in use of technologies. Almost every day there is something new. It took 50 years for half of public to get a telephone, and much less for smartphone. In rehabilitation, we have not yet reached this speed. We have to use ‘disruptive technologies’ – innovation that creates a new market and eventually disrupts an existing market, displacing established firms and products. But not all paradigm shifts mean an improvement in treatment,” she said. More than half of all rehabilitation technologies that came to the market in the last decade are not used today or they are underused because people didn’t know how to use it. Children from Gaza, for example, were given many devices for their disability but when they went home, they were just put in the closet.A successful item for rehabilitation is video on a screen so disabled children can move. There are relatively cheap virtual reality devices that can benefit them and are easy to use. A company named SenSerum offers a virtual playground that children with autism can use to jump as if they were on a real trampoline.“There is a need to find a way for robots to copy human movements, and the technology should be inexpensive, small in size and light in weight. They should be adaptable to the intelligence and abilities of each child and be able to document changes and improvements.”Robots are very good for disabled kids because “they repeat and are consistent. They can provide exact, continuous quantitative feedback through sensors,” Weiss said. Obviously, robots alone are not enough. They must be complemented by human therapists.ALYN PHYSIOTHERAPIST Orit Bartov presented the benefits of “intelligent wheelchairs” with built-in sensors to prevent collisions and “eye-drivers” that enable steering with one’s eyes. Children can visit the zoo along with the family using a respirator that’s the size of a laptop. There are cheap children’s plastic and metal wheelchairs for the developing countries.”While physiotherapy in the 1990s was aimed at strengthening one joint at a time, said Bartov, today it involves rehabilitating the whole body, creating balance, control of movement and coordination.“Muscle tone is not an aim but a means. There is cognitive rehabilitation, not just medical but also biological, psychological and social. We have to learn about the longterm effects of operations on muscle and use new knowledge in engineering, neuroscience and rehabilitation to create new interventions.”It takes about a decade for knowledge to be translated from development of technology into a product used in the field.“We used to try to change the patient, but it’s more important to change the patient’s environment to suit him,” she explained.The physiotherapist’s take-home message is that the disabled patient should always be the focus; we are not technicians but evidence-based clinicians; there is no alternative to using your hands; and don’t be afraid to try something new.”ALYN RECENTLY set up a program called PELE (Child Solutions) to create individualized products for helping children with special needs identified by therapists or family members. Professionals and volunteers in engineering and other fields donate their time to design what they need, said Dana Hochstein Mann, the director of ALYNnovation to match the innovative products with manufacturers around the world who want, through cooperation, to bring it to the world market.Mann noted that zippers developed by Under Armor for the disabled to close with one hand have expanded their use to the wider public. “A child asked Nike to make a shoe with a zipper in the back to make it easy to put on. Now they are being made as a fashionable item for the general public. Companies such as ReWalk and OrCam, are talking about accessibility for the disabled all the time.”Israel became the “Startup Nation,” said Mann, for good reasons.“We are not satisfied with situations that need improvement. We don’t like failure, but it is acceptable, as it’s better for an entrepreneur to try something than having never tried; one learns from failure. Due to the lack of funds in Israel, creative solutions result.It’s a minuscule market without neighboring countries where we can sell products, so one can start small and then grow and think global.” In the rehabilitation field, all these conditions are beneficial, she concluded.PERHAPS THE most inspiring speaker was a young man who reached the stage on his wheelchair via a ramp. Shahar Botzer, who was born with paralyzed legs but whose arms are functional, heads 2B Community, a venture capital group that invests in young, small-to-medium businesses with potential for significant growth and a turnover of over NIS 1 million a year.It aims not only at making money but also has a social goal and strict standards that examine the business’s ethical conduct in a wide variety of parameters, including fair employment, environmental protection and contribution to the community.Married and with a family, Botzer clearly exemplifies what ALYN would want all its “graduates” to strive for.
