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An Emirati woman who campaigns for the welfare of people with Down syndrome has been awarded an international honour.
The Down Syndrome International (DSI) recently announced that Nawal Hajj Nasser Abdullah Al Nasser, deputy chairwoman of Emirates Down Syndrome Association (Edsa), is among this year's recipients of the World Down Syndrome Day Awards.
Nawal Hajj Nasser Abdullah Al Nasser says her son is the main reason for her win.
Nawal, who is a mother to a 16-year-old boy with Down syndrome, told Khaleej Times that her son Abdullah Adil Al Nasser was the main reason behind her win.
"His birth changed my life. I never expected such blessings in my life, and today, I am a very proud mother. I am proud of what I have been able to achieve for the community with him," said Nawal. Abdullah has won several medals in sports and has participated in an all-Middle-East special sporting event as well.
Nawal won the award in recognition of her outstanding achievements that have enriched the lives of people with Down Syndrome.
It was an honour that made even her colleagues at Edsa proud. They said that since the organisation's inception in 2006, Nawal and the rest of Edsa have made a "significant impact" on improving the quality of life of people who are living with the condition.
"As an association, our aim is to provide people with Down syndrome with equal opportunities and grant them the inclusion they deserve in mainstream schools," she said.
The deputy chairwoman of Edsa began her career with the association as a support volunteer to the group in 2005.
"In 2006, the ministry recognised our association officially. I gradually grew from one position in the group to another," Nawal said, adding that the association now looks forward to launching several other initiatives.
"We have had many success stories. Also, we live in a society where we have great support from our Rulers. However, more needs to be done," she said.
According to Nawal, there are not enough facilities for children with Down syndrome in mainstream schools in the UAE, and "more needs to be done to provide employment opportunities for them as well".
In Dubai, Down syndrome is seen in one in every 320 Emirati births, a ratio that is higher than the world average of one in every 800 births, according to data from the Centre for Arab Genomic Studies (CAGS).
In explaining the higher incidence, the study pointed to the widespread practice of marriages between relatives, increased maternal age, and a high number of children. The relative risk for closely related parents to have babies with Down syndrome is four times higher than that for unrelated parents, it said.
World Down Syndrome Congress 2020
All winners of the World Down Syndrome Day Awards will be honoured at the 14th World Down Syndrome Congress, which will be held in Dubai in 2020.
The UAE will be the first country in the Middle East and North Africa to host the World Down Syndrome conference, which brings together more than 1,200 people from around the world. Nawal said: "We are very happy to host the congress here in Dubai. It will take place in November 2020."
>Down syndrome in a nutshell
Down syndrome is a genetic condition that is associated with intellectual disability, a distinctive facial appearance, and weak muscle tone in infancy. All affected individuals experience cognitive delays, but the intellectual disability is usually mild to moderate.
Key facts
>Discovered by Dr Langdon Down in 1862
>It's relatively common and occurs in all communities across all countries
>Affects one in 800 births across the world
>People with Down syndrome have varying degrees of physical, mental and medical issues
>A newborn with the syndrome is just like any other baby, but with distinctive physiological characteristics
>Distinct features include a small skull size, round face, upward slanting eyes placed low on the face with skin folds on the inner corner of the eyelid, a small flat nose, small ears, a tongue that appears to be large in comparison to a small mouth
>As the child grows, he or she tends to be obese and remains short in stature
dhanusha@khaleejtimes.com
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