PANAJI
At the first SMA (Spinal Muscular Atrophy) Awareness Day at the Novi Survat Goa centre in Sangolda on May 1, parents shared heart-wrenching stories of seeking medical treatment for their children, of stigma they face and the difficult questions posed by their children that they are at a loss to answer.
Offering hope and support to these families is Novi Survat, a children’s palliative care, not-for-profit organisation. This event was organised by them as the first step towards setting up a community support unit.
Novi Survat also aims to establish an SMA care centre, create awareness about SMA and its diagnosis, genetic counselling, prenatal diagnosis, management and treatment, support existing patients for their specific needs with regards to availability and accessibility of already approved therapy as well as network with other organisations in India.
A detailed presentation shed light on the symptoms and treatment of SMA. To facilitate ease of understanding, the information was presented in English by recreation therapist Ghislaine Dias and in Hindi by Dr Barbara Da Silva, Coordinator, NSG.
A need to form a society for all suffering from SMA to facilitate medical care as well as a supportive community was underlined. Offering their support to achieve these goals, among others, was Prakash Kamat (Member of State Advisory Board Goa), Valdo Fernandes (Access Manager of Roche Pharmaceuticals Goa), Avelino Desa, (President of Disability Rights Association of Goa), Sabina D’Cunha and Peter Borges, (Goa State Commission for Protection of Child Rights).
The children were entertained in the playroom, which gave their parents an opportunity to share their experiences. The first-ever SMA Awareness Day was emotional, yet filled with promise and hope that these families will be given the support they need to provide their children with a new lease of life.
