Anfal Bu Hamad is a 19-year-old painter, photographer, dancer, stage actor and singer. Her multifaceted talents may seem extraordinary, even more so considering Anfal was born with Down syndrome. Her mother, Najat Muhmmad Al-Reyahi, calls her a young girl with extraordinary talents, while people admire her for being active, organized and jolly.
Anfal is not unique in Kuwait. There is approximately one baby born with Down syndrome in 581 births in the country, according to Arab Center for Gene Studies data. Historically children with Down syndrome were considered shameful or kept out of the public eye. Attitudes, however, have changed as more families recognize the special gifts and talents of these children.
Down syndrome is a genetic disorder caused by a chromosomal abnormality. It affects the patient’s intellectual and mental abilities. There are three types of commonly known Down syndrome conditions, and they can appear as severe, moderate or slight retardation. Down syndrome cases occur equally in all races with an overall incidence rate of approximately 1 in 800 births. ‘Down’ syndrome was derived from the name of John Langdon Down, a physician who described the condition in year 1860.
Children with Down can live full, meaningful and productive lives. Dr Essa Mohammad Al-Jassem, a consultant at the Center for Child Evaluation and Teaching (CCET) and a Down syndrome expert, explained there are several types of people with Down syndrome. “Their conditions vary from one person to another,” Dr Essa said. “They are not all the same – they are unique persons and some of them are really talented, while some of them can perform jobs,” he said.
Patients with severe cases normally live only a few years, because of complications of the heart, liver or other internal organs. But patients with moderate and light symptoms can live full, normal lives. They are very sensitive people and want to be close to the people they love; they require attention which should be given freely and wholeheartedly so they can live longer. Survival of such patients depends on how parents, society and medics handle them, Dr Al Jassem explained.
“Parents should understand they are humans, so they deserve respect and proper care just like anyone of us. Down syndrome patients, especially those with moderate and light symptoms, can get married, but have to avoid having babies because it can be transferred to babies genetically. They can also work and socialize, learn many skills, attend schools and some of them have achieved great accomplishments. I know such a person and he is touring the world. We have another patient here at the CCET and he is in charge of the library,” Essa said.
“Teaching them early can help them develop and they can be valuable members of the Kuwait society. They can make friends with people, can manage themselves, cook and leave the house and come back. They can be independent; normally some of them have no formal education, but it’s okay,” he said.
A day in the life of Anfal
Anfal’s day begins with a reading of the Holy Quran. Then she prepares to go to special school, where she spends most of the day with lessons in arts, reading and writing. “They have lessons; of course not the same as the curriculum of normal students, but they are busy every day in school. They have cooking classes, and she likes to cook,” her mother Najat said, who decided to retire early from her job as an arts and music teacher to focus and give more time and attention to her daughter.
“I taught in schools before I decided to retire and concentrate on my daughter. I worked hard for others, but not too much for my own daughter, so I felt guilty. I took early retirement to concentrate on my daughter,” she said. “When I retired, I put most of my money in my home. We shifted to this house lately (in Abdullah Mubarak), and we are thankful. I have spent most of my retirement money. I still have a lot of work to do, but I am happy. I have a son who is now in college and also very active. He loves his sister very much. I sent him to America to study, but he missed his sister, so he came back,” Najat said.
During her early years, Anfal demonstrated a love for art. According to her mother, when she was four months old, Anfal was able to hold a pen and imitate drawings. “I am an artist too and an art teacher, so I know she has the talent. When you give proper care to Down syndrome patients, they will have a better quality of life. She can be better than me. I know there is no cure for Down syndrome, but we can help them improve their lives tremendously,” Najat said.
“I want to give all the necessary support to my only daughter. I am now concentrating on her and it helps a lot in improving her craftwork – we were able to participate in many art competitions,” she noted. “I retired eight years ago, but I couldn’t completely abandon my first love of teaching, so I organized a small group for Anfal – I call it Anfal Team,” she said.
That group has about seven Down syndrome and autistic students. “I formed this group to help them support each other. Parents should give strength to each other and give all they can to their kids. I hold classes in my house and we help each other. I get monetary support from the government, but not for everything. We usually participate in programs and arts competitions at our own expense,” Najat said.
Anfal has won several awards both in Kuwait and abroad. Her specialty is mixed media painting. “I help her shape the idea, then she does it on her own. But she gets tired quickly, so a painting will not be competed in one sitting. It needs a week or sometimes even months to finish. But I don’t force her at all. If she is in the mood, she can draw small things in a day,” said Najat.
In Kuwait, the government offers special care for Down syndrome patients and those with other disabilities by providing them regular financial aid, schooling and other benefits. “The government supports them and provides money so they can go to school. They have their own association that looks after their welfare. They can apply for a job and can get the job they want. The ministry of education has a program for the inclusion of Down syndrome patients; the government wants them to be in mainstream schools so that they can play and socialize with other kids,” Dr Essa explained.
By Ben Garcia