Maxim is about to be 13, he's in the 6th grade, he's playing sports, he's trying to live a normal life as much as possible when you have a serious diagnosis in your medical record - epidermolytic ichthyosis. This is an orphan (rare) genetic disease, whose main symptoms are the inability of the skin to retain moisture and exfoliate normally.
Rare genetic skin diseases affect other organs and systems: vision, hearing, immune system, gastrointestinal tract, musculoskeletal system - sometimes all at once. Therefore, patients like Maxim need regular monitoring by a team of specialists. Moreover, in medical centers where they really understand the specifics of rare diagnoses.
The Butterfly Children Foundation organizes hospitalizations for its wards in the country's leading federal pediatric institutions. Examinations are carried out there, exacerbations are stopped, external and systemic therapy is selected, concomitant diseases are corrected, and, if necessary, molecular genetic diagnostics is performed.
And after treatment, children need rehabilitation to consolidate the result. Our students undergo it in the sanatoriums of the Presidential Administration of the Russian Federation in Crimea, Moscow region and Sochi: with physical therapy, physiotherapy, various supportive skin procedures.
But it all starts with the simplest and most basic thing - the road. We are opening a fee for travel to and from the place of hospitalization and rehabilitation for Maxim and two more foundation wards - "butterflies" and "fish", as well as one accompanying adult for each ward.
Let's help Maxim and the other children get to a place where they can be helped. This is a way to stabilize the condition, to develop, to be able to live not only between exacerbations and hospitals.
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