Date : 8 February
Venue : Hotel Yak and Yeti
Hosted by : Shila Thapa , president, Down's Syndrome Association Nepal (DSAN).

Participants:

Sangam Uprety , sales representative, Bhat bhateni Departments Store; Prajwal Singh Pradhan , occupational therapist, DSAN and head of department, Spinal Injury Rehabilitation Centre; Om Sitoula , management consultant; Sharada Upreti, homemaker; Ajit Raymajhi , consultant paediatrician, Kanti Children's Hospital.

Down Syndrome is prevalent in our society but has seldom been talked about. Parents prefer to keep their Down's children out of sight rather than try to understand and help them lead a normal life. According to Down's syndrome International, there are more than 2,000,000 people with Down's syndrome around the world. On the occasion of the World Down's Syndrome Day on 21 March, VOW celebrates the lives and achievements of individuals who, day to day, fight the challenges of this syndrome with hope in their hearts, love and compassion.

Shila Thapa, President of the Down's Syndrome Association of Nepal , hosted this month's My Cup of Tea where participants shared their personal experiences and provide insight on creating awareness for those living with this syndrome.

From Isolation to Conversation

When I was pregnant with my second child, I had taken a lot of medicine due to which I was always guilty that my child was born a Down's baby because of me. Later after speaking to doctors and understanding the reasons behind this syndrome, I slowly overcame the guilt. Satyam was diagnosed with this syndrome five months after his birth. In comparison to other children, Satyam was a very slow child. He frequently fell ill and could not digest even small amounts of solid food. Apart from the syndrome, he also had a major heart problem and doctors suggested that we take him to India for an operation. After a series of check-ups, doctors in Delhi said that there was very little chance that Satyam would survive even after the operation. They tried convincing us that it was useless to spend money on his treatment. By that time, Satyam had begun to suffer from vision and hearing loss. Luckily, we came across Rekha who was the President of the Down's Syndrome Association in India . She and a few psychologists from America convinced us that they would guarantee his life after the operation. We then took Satyam to Sri Ram Hospital where necessary arrangements were made. Satyam remained in ICU for almost a month after which he came back fully recovered from his heart problem. He does have a few abnormalities even today, but I am proud to see the transformation in him. If I had shied away and given up hope on my child, I would never have seen him this happy. I have gone through a lot of pain during the early days and I clearly understand how other parents with Down's children feel. The biggest lesson I have learnt through my experience is that the more you hide from a situation, the bigger it becomes. Parents should never isolate their Down's children for fear of being looked down upon. Instead, they should encourage them to come out and mingle with other people. Our children are no less than any normal child. They have their own interests, desires and talents and it is up to parents to help them realise their aspirations. The more you talk about it and interact with people having similar experiences, the better it is for the child. This is the reason behind starting this association in Nepal . Our aim is to lead children with Down's Syndrome towards a better future. We focus primarily on educating the children, developing their confidence and making them independent.

Sangam Uprety

I am aware that I have Down's Syndrome but I don't feel I am any different. I am very independent and have worked as sales associate at Bhatbhateni Department Store for the last four years. When young, I was even afraid to climb stairs but today I commute to work on my own. I love swimming, running, singing, cooking, yoga, going for morning walks, watching Hindi serials, and reading newspapers but I enjoy dancing most. I have participated in numerous competitions and have won first prize in most of them. I am skilled at making candles, envelopes and repairing bicycles, and am currently learning computers and typing. I feel I am a role model for others with this syndrome, and I urge them to learn skills and be independent. In future, I aspire to do well in my job, visit other countries especially America , and take part in the Special Olympics. I recently got married and hope to start a family of my own. I believe the love and support from my family and my schooling at Nava Jyoti School is instrumental in making my life happy, active and independent.