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Down Syndrome: ‘Sky isn’t My Limit’

– Mohammed Atherulla Shariff

Knowledge about availability of resources and access to them is as important as the resources themselves. Many people are unaware of the efforts being put in to educate and help the people suffering from Down syndrome. Hence a walkathon was organized recently in Bangalore to draw attention to what can be done to make schools and workplaces more inclusive for people with the syndrome. Children with Down syndrome, aged between 3 and 33, participated in the walkathon with their families to commemorate the Down Syndrome Awareness Month in October.

“It was a walk to raise awareness, network and celebrate solidarity among parents and grandparents of children with Down syndrome. We consider ourselves a big family,” said Lalitha Bilgi, the initiator of the walkathon. It also served as a forum for families to exchange tools and resources, and build a support network to share crucial information regarding any health problems their children face. The walkathon was organised by Down Syndrome Federation of India.

‘Asman Hamara Hai’, or ‘Sky is not my limit’ like slogans have booster effect on parents and siblings of children and adults with Down syndrome. These were the inspirational slogans dedicated to people suffering from Down syndrome in the 7th India International Down syndrome conference held in Jaipur in September. It was annual flagship event of Down Syndrome Federation of India.

Islamic perspective
Most parents talked positively about the birth of their child with Down syndrome as being the ‘will of Allah’, expressing their affection for their child and gratitude to God. Islam urges believers to treat people with intellectual disabilities with kindness and to protect people with disabilities. Emphasis is laid on the preservation of intellect clearly demarcating between competency and incompetency.

Those deemed “mentally incompetent” are excluded from religious duties, such as daily prayer and religious services.

Some are more likely to turn to a faith leader (imam) than a mental health professional. Supplication, prayer, or recitation from the Qur’an may provide comfort in times of stress but may not adequately address their illness. Building connections and cooperation between the spiritual and physical aspects of healing and recovery, psychiatrists can improve both quality of care and quality of life.

Govt. scheme
The National Trust Act enforces a legal guardian for every individual with Down syndrome above the age of 18. Families can open a bank account in the name of a person with Down syndrome or create a Trust for their benefit. Spending money is controlled by the family member. Adults with Down syndrome can vote in India.

Insurance
Down Syndrome is a genetic disorder resulting from the existence of a 21st chromosome, which is extra and affects many children in India. This condition often comes with various health and developmental challenges, making the need for regular medical attention paramount. For families with a Down Syndrome child, health insurance isn’t just a safeguard – it’s a necessity. With rising medical costs, having adequate health insurance ensures that these children receive the best care without imposing a heavy financial burden on the families.

These plans will pay for the treatment if the child lives for at least 30 days after being diagnosed. In India, securing health insurance for a child with Down Syndrome is more than just a safety net – it’s a lifeline. Given the medical and therapeutic needs of these children, insurance helps ease the financial burden on families.

Helpful Books
Books are also available that can be helpful for upbringing Down Syndrome sufferers, like Down Syndrome Parents Guide, Nutrition Booklet, Down Syndrome but not out, Life Starts at Sixteen, etc.

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