When the doctor asked Sonia Al Hashimi 22 years ago if she knew about Down’s syndrome, little did she realize that her search for its meaning would change her life forever. “I vaguely remembered a photo of a child with distinct features labeled as suffering from Mongol disease on a school board, and didn’t understand what that had to do with me,” said Mrs Al Hashimi, recalling the conversation with the doctor who helped deliver her afflicted son at the Abu Dhabi Corniche hospital.
In an incubator, suffering from heart and muscle complications after a premature birth, her four-day-old son Saif was fighting for his life. As the days went by one of the nurses advised Mrs Al Hashimi to “just give up” as Down’s syndrome babies “rarely survive”. “That statement just did something to me,” she said. “It stirred in me a feeling of defiance, where I wanted to prove to the world that my son is going to make it, and he will be something special.”
Saif has since won five medals in swimming at Special Olympics, and today Mrs Al Hashimi is the president of the UAE Down Syndrome Association.
Down’s syndrome, named after John L H Down, the English doctor who first described it in 1866, is a genetic disorder stemming from a chromosomal abnormality. Those with it are normally intellectually impaired, and may have stunted growth and other physical abnormalities.
“For the first five years of Saif’s life, I put everything on hold,” Mrs Al Hashimi said. “I held off having more children and devoted myself completely to teaching him to become independent.” She did everything to “stimulate” her child’s development, including regular doses of Sesame Street, muscle exercises and recreational outings. “I painted his bedroom with vibrant, loud colors, and brought him intellectual, stimulating toys,” she said, “and did everything I could to awaken in him all his senses.”
Mrs Al Hashimi even learned English to be able to read books on Down’s syndrome. She eventually had five more children. Saif is now the attentive big brother. Mrs Al Hashimi recalled “too many” troubling social incidents – from parents demanding that her son be pulled from a mainstream public school when she tried to integrate him there, to acquaintances asking her to keep him at home when she attended social gatherings. “It used to hurt me so much,” she said, “but I refused to keep my son locked up. If something is not perfect on the outside, then people here just reject it.”
According to recent statistics by the Centre for Arab Genomic Studies, 21.4 babies per 100,000 are born with Down’s syndrome in the UAE, about double the global rate...