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“I love music, dance and painting. I have also started enjoying my computer classes”

When Zubeen Garg, the wildly popular singer and heartthrob of Assam, died in September 2025, among the hundreds of thousands who mourned his death there was a 12-year-old girl living in Guwahati’s Christian Basti. Mamoni Khatun, who has Down Syndrome (DS), was a die-hard fan of “Zubeen-da”, as she called him; she would dance to his music and sing his songs, imitating his singing style. “When Zubeen-da died she was aware he was no more and was so upset,” says her mother Phool Begum (42).
 
Phool Begum and her husband Jakir Hussain (48), who works as a driver, used to live in Rampur Nalbari in lower Assam. When Mamoni was born, in a government hospital, the doctors informed the couple she had a hole in the heart which would gradually heal with age – and it proved to be true. They also indicated she would be “different” but did not specify how. This ‘warning’ alerted the parents to Mamoni’s early signs of delayed speech and movement and they lost no time in seeking advanced medical treatment.
 
Jakir and Phool frequently made the 60 km trip to Guwahati where she was diagnosed with DS at age four and given regular sessions of physiotherapy, occupational therapy and speech therapy. “We used to carry her,” Phool recalls. “She was as light as cotton, as if there were no bones inside her.” Realising that therapy was making a marked difference to her well-being, the couple decided to move to Guwahati. An added incentive was that this city also housed the reputed NGO Shishu Sarothi dedicated to the education, training and rehabilitation of children and young adults with developmental disabilities.
 
Mamoni has a brother, Akib Hussain (18), who is doing his B.Com. Their parents do feel sad that their daughter’s education will not match that of their son because “she has a weak brain” as Phool describes Mamoni’s intellectual disability. However, Mamoni is thriving in Shishu Sarothi where she is getting a basic education and vocational training. “She needs to be constantly pushed to study,” says her mother. She shows a preference for the arts – she loves music, painting and dancing – but she is also enjoying the computer classes she has recently enrolled in. “She is better at writing than reading,” Phool says. “If she finds it difficult to speak something clearly to you she will write it out for you.”
 
In her early childhood the couple had got a “locomotive disability” certificate made for Mamoni but it became invalid once she was able to walk. However, they recently applied for an intellectual disability certificate after getting her IQ tested and hope to receive it soon. She used to depend on her mother for her basic needs such as eating, bathing and wearing clothes. But with time and practice, she has learnt to perform her activities of daily living with absolutely no assistance. Phool told us her daughter started menstruating last year and is taking time to get used to the process and learn how to maintain hygiene.
 
Mamoni loves meat. Eating fish is a challenge because of the bones she has to remove, and that requires patience! Mother’s home cooking is what she prefers; she eats no junk food. Phool says, “I hope Mamoni can survive and thrive independently on her own even though one day her parents won’t be there. She has enough intellectual and cognitive ability to tell right from wrong, and to decide what she wants. If she is able to live a life of her own, that would be the biggest success and source of strength for us.”