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Nectaria's story

Nectaria will soon be two years old. She is a beautiful, cheerful little girl who loves to play and smiles all the time.

But she wasn't always like this. At birth, she was given the serious diagnosis of Ring Chromosome 13, a rare genetic condition caused by having an abnormal chromosome 13 that forms a ring.

Among other complications, this diagnosis can lead to severe vision and hearing problems. Nectaria's mother is a doctor and knew during pregnancy, that her baby would be born with a serious disability.

More than one year later, Nectaria is a happy child who has made lots of progress

When Nectaria was less than one year old, Dr Florina Stoica, the ophthalmologist working as part of the early intervention multidisciplinary team in Timisoara, referred Nectaria and her parents to the Early Intervention Support Centre established by Sense International (Romania) in Timisoara. The team assessed Nectaria who, at that point, cried all the time, could barely keep her head straight and rarely responded to visual stimuli or bright objects.

Nectaria wearing a hatMore than one year later, Nectaria is a happy child who has made lots of progress. She especially loves the water bed, which makes her giggle and laugh, and loves playing with water in general. Both her parents are determined to provide Nectaria with everything possible – they even manufactured their own 'Little Room' and resonance board to use at home.

The most important thing we did was to help the parents provide Nectaria with the support she needed. They are extraordinary, phenomenal parents.

Her father, an IT specialist, became our resource at the centre when it comes to special software to stimulate vision. He shared with us everything he found and we now use this software with other babies. says Gabriela Jianu, Coordinator of the early intervention team.

First published: Friday 7 June 2013
Last updated: Wednesday 20 September 2017