x Abu Dhabi, UAESunday 23 July 2017

Hospice for children will be first in the Middle East

The construction of a Dh128m refuge in Kuwait for youngsters with terminal or life-threatening illnesses is expected to open within a year.

Margaret al Sayer, the managing director of Bayt Abdullah Children's Hospice, which is under construction, below, in Sulaibikhat.
Margaret al Sayer, the managing director of Bayt Abdullah Children's Hospice, which is under construction, below, in Sulaibikhat.

KUWAIT CITY // Care for terminally ill children in the Middle East will receive a boost when the region's first children's hospice opens within a year, according to Margaret al Sayer, the director of the Kuwait Association for the Care of Children in Hospital, at a fundraising event last week. The hospice has raised more than 4.5 million dinars (Dh57.3m) of its total cost of around 10 million dinars, Mrs al Sayer said. She expects the finished buildings, which are being built on 22,000 square metres of government-donated land, to be completed in April. "[The] specialised care includes pain management and symptom control as well as emergency in-patient services, home care and social activities for the whole family," Hilal al Sayer, who is a medical doctor, wrote in the hospice's brochure. The al Sayers are husband and wife. Mr al Sayer is the Kuwaiti minister of health. The concept of building a refuge for children with terminal or life-threatening illnesses is new in the Gulf, the association says. Currently, the government pays for many seriously ill young Kuwaitis to seek treatment overseas. But the charity has campaigned to raise awareness of hospices and their role in palliative care. "One of the things we had to overcome was perhaps people's fear of death, especially when it's associated with children," Mrs al Sayer said. She said the association also had to teach health workers "that children needed special support and could be managed with morphine, and other drugs, without making them into addicts". Bayt Abdullah Children's Hospice, or House of Abdullah, includes 11 chalets to house the families of sick children when they need the hospice's support or medical expertise. The complex will include playrooms, a school, a gymnasium, gardens and a mosque. "The main element was to give the child control of the environment, to make the child feel he owns his choices," said Aliaa al Ghunaim, the architect. "The idea was to make it more recreational, more like a paradise." Five years ago, a relative of Ms al Ghunaim, an architecture student, heard that Mrs al Sayer had been toying with the idea of building a refuge for terminally ill children. Ms al Ghunaim approached the charity and offered to design the complex for her final-year thesis. She was 23 and it was her first major project. "I didn't know what a hospice was at that time," she said. "It was a dream in Margaret's head. She wasn't planning on doing it yet." The complex includes a Ferris wheel, walkways and viewing towers that are designed to accommodate the children's wheelchairs, intravenous drips and caretakers. Mrs al Sayer said the Ferris wheel's design had stumped them until they decided to incorporate features of the giant Ferris wheel on the Thames, the London Eye. Some people think the amusements are frivolous, Ms al Sayer said. "But even children who are on the verge of death have dreams and wishes to go to Disneyland, to go to Euro Disney - to do the normal things that kids do." Bayt Abdullah is named in memory of the first Kuwaiti child to receive homecare support from the association in 1989, after he returned from the United Kingdom, where his treatment for cancer failed. Abdullah's mother looked after him for six months with the charity's help before he died just before his fifth birthday. The organisation said its "collaboration enabled Abdullah to share many pain-free, often fun-filled, special days with his family". Mrs al Sayer said the association's basic philosophy still revolves around treating children at home because that is what children usually want. The hospice will be a model for the region, she said, by providing free care for any child in Kuwait, regardless of their nationality or religion. The hospice also hopes to offer its services to other countries in the Gulf when rooms are available. With about 100 staff, four doctors and a carer-to-child ratio of about 8-1, the treatment is not cheap. The centre will cost one million dinars to run every year, the charity said. The association has helped to look after 35 sick children in their homes in the past three years. The organisation estimates that more than 100 children die from such diseases as cancer, leukaemia, cystic fibrosis or muscular dystrophy in Kuwait each year. jcalderwood@thenational.ae