Jasmina likes to listen to music, watch cartoons on TV, go for walks with her sister and brother. She likes it when her mom wears her favourite clothes and caresses her head while combing her hair, but more than anything else Jasmina likes to hear her father's voice on the phone. When he speaks to her, she shouts for joy and her eyes shine brightly when she hears his voice.
Jasmina is 7 years old today. When she was just 2 years old, she was diagnosed with Rett Syndrome, a rare genetic disease that causes the patient to lose speech, appetite, use of hands and many other functions. The little girl also has frequent epileptic seizures.
Her mother, Mirela, says that since then they have only prayed for her recovery. "We couldn't believe how suddenly the girl didn't talk to us anymore. She changed a lot: she cried, she got nervous very quickly, she fell to the ground ...”- says Mirela.
Together with her husband, they brought her to Tirana. For a short time, the girl underwent medical visits and speech therapies. After a few months, the girl returned to the village where they lived, in Berzeshta of Librazhd, and during all this time she has never been able to receive the specialized services she needs. Mirela points out that they do not have a car and to get to the service centre, in the city, they have to go out on the main road and wait for the random vans. "It has happened that we have waited for even 30 minutes, but it is impossible to keep Jasmina… She gets very nervous and starts shouting. Everyone sees us…”- Mirela confesses as she tells us about the fight to cope with the mentality that closes children with disabilities at home.
Last year, Jasmina went to kindergarten for a while. Her mother accompanied her and sat with her so that she could adapt more easily, become more comfortable, and be able to learn something. Mirela played the role of the educator for her. This year, she wanted her daughter to start first grade. “I was afraid. She was not ready. We decided to take her to the centre more often this year, hoping that even the epilepsy crises would become less frequent and we hope to take her to school next year” - says Mirela.
She prays for her daughter to be able to improve. "At least she could say once again to me “mom” …that’s all I want!” - says Mirela.
For Jasmina and other children like her to be able to receive specialized services, World Vision has launched the Hello program, which will enable home visits for children with disabilities.
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