‘Goa needs respite centre for caregivers of children having chronic illnesses’

Margao: Families caring for children with chronic illnesses and neurological disorders require a respite centre in Goa where they can temporarily leave their children to take some rest, said Barbara da Silva, coordinator of Novi Survat, the NGO that provides palliative and holistic care to children living with life-limiting illnesses.

“We see parents who are worn out caring for their children with chronic illnesses. Many of them are single parents, and in some places, the parents are dead, and relatives are caring for these children. The caregivers need a breather, and the children too need a change of environment sometimes,” she said.

Da Silva was speaking on the sidelines of a Children’s Day programme at Clube Harmonia de Margao, organised for children with various types of severe disabilities and rare illnesses who have a shortened lifespan, and their siblings and families, from the lower socioeconomic strata.

In several cases, the parents who are migrants, with no other family in Goa, are struggling to make ends meet and are forced to leave their child or teenager locked up and alone at home while they are out at work. Some parents work in shifts to be able to care for their children, and in some cases, the elder sibling, who is still a child, also takes on the role of a parent to care for the sibling who is ill.

Novi Survat works with GMC, both district hospitals, and is presently reaching out to around 300 children and their families at their centre in Sangolda as well as at their homes, changing their feeding tubes, conducting physiotherapy, and various other interventions to ensure they are able to make the best of the days, months, and years they have to live.

These are children with cerebral palsy, spinal muscular atrophy, syndromic disorders like Down syndrome, seizures, congenital heart and kidney diseases, inherited and familial conditions like haemophilia, thalassemia, cancer, HIV/AIDS, and all rare diseases.

Director of Novi Survat and former head of GMC’s paediatric department, Dr Philomena D’Souza, told TOI that the children and their families are looking for love, affection, and understanding, not pity, which they often receive.

The Children’s Day celebration was organised for them and their families with the intention of getting families to mingle together so that they realise their problems are not problems anymore.