A Day to Remember That Every Child Deserves a Chance

Emina Cerimovic is a disability rights researcher at Human Rights Watch.By Emina ĆerimovićNEW YORK, Feb 27 2017 (IPS)The day I met Julija she was playing cheerfully with her baby sister on the floor inside their room in Kragujevac, a small town in southern Serbia. When she saw me – a stranger — on the doorstep, she smiled widely and stretched out her hands, offering a hug. As I held her, I could hear how difficult it was for her to breathe. I looked at her, she smiled and touched my face with her hands and only then did I see that Julija’s fingers were webbed.Julija was born with Apert Syndrome, a rare genetic condition. Children with this syndrome have fused skull bones, resulting in distorted facial features, vision and hearing loss, trouble with breathing and eating, and learning difficulties. In Julija’s case her fingers and toes were not separated either, which made holding a spoon or picking things up difficult.Her parents – Jasmina and Ivica – told me about their struggle to provide Julija with the health care she needed to stay alive and to develop. For three months following Julija’s birth in 2012, her parents used every penny they had to ferry their daughter across the country in search of specialists who could help. The repeated advice they received was not helpful: Place your child in an institution. It’s best for you and her. “One doctor even told us that it will be a torment for us to keep her with ...
Source: IPS Inter Press Service - Health - Category: Global & Universal Authors: Tags: Headlines Health Poverty & SDGs Serbia Source Type: news