The preliminary diagnosis of 3-year-old Savely is KID-syndrome - keratitis-ichthyosis-deafness. This is a rare genetic disorder that combines the above symptoms.
From the first days of his life, the boy lives with pronounced lesions of the skin, nails and hair, as well as a number of severe concomitant pathologies. He needs to be regularly hospitalized in federal medical centers, where doctors familiar with the specifics of rare diagnoses can conduct a comprehensive examination, select therapy, adjust care, work with complications and accompany his development. Such specialized care allows not only to relieve symptoms, but also to stabilize the condition and prevent serious complications.
The Butterfly Children Foundation is opening a collection for tickets to places of hospitalization and rehabilitation for Savely and two more wards from remote regions of Russia.
Let's help kids with rare skin diseases to have access to the necessary treatment.
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