ROOPALI

Therapy Instructor on the left & Sangeeta (Mother) on the right

Sangeeta, mother of Roopali, a six year child who belongs to Delhi and her family has lived here for generations. The only thing she remembers is that they came from Rajasthan according to family stories passed down from generation to generation. Her husband is a tailor and is adept at stitching blouses for sarees and skirts for women who absolutely need these items of clothing for the sarees, all women wear. She was sent to school but discontinued soon since they family felt it was more important for her to get married. So she was thought fortunate to have been able to interest a tailor who had a steady income from his little shop in Dakshinpuri itself where Samadhan also has its first service center. Sangeeta`s first pregnancy was something to celebrate and fervent prayers were made for a boy child. However her happiness turned into a major night mare when she gave birth to a girl and one who was identified as a child with Cerebral Palsy. She says that her first reaction was one of unbelief that something like this could happen to her. Neither she nor any of her family had had any awareness on disability and in particular intellectual disability. The fact that the baby was a girl no longer mattered. But Sangeeta's story is one of courage, commitment and an absolutely amazing consistency to make her baby daughter, Roopali progress as much as possible. Her whole attitude has taught us all humility and a lesson to show that “unconditional love” can conquer anything. It is no longer just a term but has found actual meaning in Sangeeta's and Roopali`s story.

When asked what her first reaction was to realizing Roopali`s condition she says with a smile. "There was just one thought in my head and that she was my daughter and all I can do is love her. I have no time for weeping or being angry”.

Roopali came to us on 6th September 2012 and was diagnosed with Cerebral Palsy Spastic quadriplegia by the pediatrician in our center. When she first came to us she could not sit up, had no eye contact and was flat on her back. The multidisciplinary team planned out specific therapy sessions for her. Today, it is a joy to document the remarkable progress Roopali has made. There is improvement in her grip and body movements. Also now she is taking little bit of solid food, whereas earlier she was dependent on liquid diet only because of which her immunity and growth level was very low. She can now hold things for few seconds with both hands. She also smiles and makes eye contact. Reacts to sounds in her surroundings. She is also able to sit with very little support. It has taken about three years for Roopali to reach this stage. The unstinting input from Sangeeta in carrying out the exercises at home with Roopali, her absolute conviction that Roopali will improve, her ever smiling face have been a major impetus for all the other mothers as well as for the staff. The only negative aspect of this is the lack of social opportunities for both Sangeeta and Roopali to be a part of the community in which they live. Sangeeta says that she usually avoids meeting people and that mostly people avoid her and Roopali as well.

We are trying to bring about some change in this situation through workshops and house to house visits through our survey workers. But our strength is Sangeeta's courage as well and she is truly an agent of change and has impacted positively on other mothers as well.