Aizana has hereditary distal motor neuronopathy and requires rehabilitation.Verified by Tooba

Aizana has hereditary distal motor neuronopathy and requires rehabilitation.

Tut Dobro

Charitable foundation · Republic of Dagestan

collected
of RUB 244,155

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About the campaign

Aizana is seven years old. She has a rare genetic disorder, hereditary distal motor neuronopathy type 9 (a pathogenic homozygous variant in the COQ7 gene).

From birth, the disease manifested itself as muscle weakness: she was late in sitting and walking. By the age of two, her feet began to collapse, and orthopedists diagnosed hallux valgus. By the age of three, Aizana had developed flat-footed valgus, ataxia (impaired coordination), and a change in gait. She began stumbling frequently, falling, and tiring quickly.

The family consulted various specialists, but a definitive diagnosis was not forthcoming. Only after a trip to Moscow and a series of genetic tests was the true cause of the disease determined. Unfortunately, the disease is progressive. To slow its progression and give Aizana a chance to develop, she requires ongoing rehabilitation. But the cost of such treatment, including accommodation, is prohibitive for the family.

Let's work together to help Aizana complete this course, which is crucial for her health and future!

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Tut Dobro

Charitable foundation · Republic of Dagestan

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