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Denisa's story

Smiling girl holds up certificate

We met Denisa 10 years ago, when she came in Bucharest with her mother for a medical consult, for her sight, hearing and heart conditions. She was so little and warm, with beautiful eyes, blonde hair and so much trust in people like only small children can have.

Denisa was born in Oradea, weighing only 1.3kgs, being born two months prematurely, suffering from Hyproxia and having to be resuscitated by neonatal physicians.
At three months old, Denisa’s mother was referred to Targu Mures Institute of Cardiovascular and Transplant Diseases, where she received an awful diagnostic: congenital heart malformation.

In 2005, the suspicions of the initial diagnosis were confirmed: congenital rubella syndrome; as her mother had had Rubella during the early stages of pregnancy. Denisa has a congenital bilateral cataract, convergent strabismus on her left eye, total hearing loss and serious heart problems. There was a single word to describe this, unknown back then, deaflblindness.

Doctors gave her a reserved diagnosis; they didn’t believe that Denisa would be capable to have a good life, an independent one, or access to education. It was a demoralizing diagnosis for Anita, Denisa’s mother, there seemed to be no way out.

Two years later, Denisa was evaluated by a Complex Commission for Child Protection Bihor, and that was the moment when her mother found out there was hope, and this could be found in a new programme for children with sensory impairments. This new programme was named Early Intervention for Newborn Babies and Children with Hearing or Vision Impairment, and it was made in partnership with Inclusive Education Center Cristal and Sense International Romania.

Denisa was put in new situations to explore and fill the environment, being exposed to different kind of toys, different people, and lights and different textures, in a structured way conducted by an early intervention worker.

An adapted intervention plan was made, specially designed for Denisa. It involved visual and hearing stimulation, speech therapy, physiotherapy, to help Denisa and her family to find a way to know to environment and to communicate with other people.

“Coming here it was a very good choice, Denisa is more calm and willing to do different activities together with us “ Denisa’s Grandmother

Denisa’s evolution in the early intervention programme was fantastic. At the age of five she was integrated in an official class for children with sensory impairments in kindergarten and, in 2013, she attended first class in school. She has recently graduated fourth class with a huge smile on her face, flower diadem on her head and many thanks for everybody.

Unfortunately, Denisa’s heart surgery has remained an issue for years, due to the inaccessibility to the surgery in Romania. The closest institute that performs this surgery is in Italy, which Denisa’s family cannot afford. Denisa cannot be considered for cochlear implant surgery until she has had her heart procedure, as the risks are too large.

“My daughter’s quality of life will be improved if we receive funds for the authorities for this heart surgery. Unfortunately, country physicians don’t want to do this high risk heart surgery and they don’t give hope that one day it could be done or that funds can be ensured for this kind of intervention” Denisa’s Mother

Denisa is included in a National Programme for Pulmonary Arterial Hypertension. Twice a year, she goes there to have her heart checked for free, which is a chance to be kept under observation by cardiologist doctors.

Denisa graduated fourth class with very good results and she is very active, she chooses what she wants to wear, and she can get herself food when she wants. She’s very happy when she finds a mobile phone or a tablet with internet access and video games or different movies.

Future plans include fifth class in a different school this autumn, and her mother hopes that Denisa will be fine there. Some teachers there have taught Denisa beforehand and the new teachers seem to be very inclusive.

“Thank you for everything what you have done, Sense friends, because you fought for children like Denisa to have a chance to be educated in special schools with specials classes for deafblind children. I don’t know how our present and future would have looked like if you didn’t do what you did with special classes for deafblindness children. I am very pleased and I hope that many children will benefit from what you to do, and more parents find out what are the possibilities in special schools for their children” Denisa’s Mother.

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