A girl with a rare disease. 2
A girl with a rare disease. 2
Active

A girl with a rare disease. 2

The project is carried by
Started: 11.06.2024
Cherkasy region
Active
Still needed
26777.00 UAH
Funded
39%
Total goal
44000.00 UAH

4-year-old Sofia Taran has a rare disease – neuronal ceroid lipofuscinosis type 1. This is a disease in which the toxic substance lipofuscin accumulates in the neurons. It occurs in young children and is manifested by epileptic seizures, rapid regression of psychomotor skills, loss of learning and self-care. This is what happened to Sofia.

Until the age of 2, the baby developed like other children her age, but then she stopped eating solid food, developed movements as if she was washing her hands, and after waking up from sleep she would have a fever as if she were cold. Over time, her condition deteriorated: first, Sofia's walking deteriorated, then she stopped walking, then sitting, picking up objects, holding her head, talking, chewing, and responding to directed speech.

Fortunately, the rehabilitation sessions have somewhat improved Sofia's condition: her attention span has improved, she has eye contact and interest in classes, and she expresses positive and negative emotions well. However, there is still work to be done, and the girl's family is ready to do it. They just need our financial support to pay for a new rehabilitation course for Sofia. Let's support them!

Full name: Sofia Taran, 06.02.2020
City: Kostiantynivka village, Cherkasy region
Diagnosis: Degenerative disorder of the nervous system. Neuronal ceroid lipofuscinosis type 1. Sensory-motor alalia. Pseudobulbar syndrome. Spastic tetraparesis, level V motor disorders according to GMFCS
ID: 9509

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19.07.2024 17:27
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16.07.2024 11:58
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13.07.2024 07:59
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