Supporting a little Myroslav, who has a rare skin disease

Content of the support: We help buy the skincare products and Filsuvez gel needed for Myroslav.

The amount of the support for skin care products is €2,400 per support period and treatment gel €4,699 per calendar month.

Duration of support: skin care products November 2023 – October 2024 and treatment gel September 2024 – November 2024**.

* Normally, the Children’s Foundation will extend the support at the end of the support period on the basis of need.

Introduction

Myroslav (born 2023) suffers from a very rare skin disease called Bullous Epidermolysis. It is a very rare disease (1 child in a million worldwide). The child’s skin develops blisters of varying sizes, which heal slowly and cause pain due to erosions that break off. Children’s skin is very sensitive and can be damaged by any small trauma or friction. Constant blistering in the same place can lead to scarring and lumps, which can affect the mobility of different parts of the body. Constant blistering can lead to secondary infection. As a result, the child’s wounds require daily care and bandaging, which requires wound care products in quantities that are not fully covered by public funding.

Due to the child’s illness, the costs for a family of 10 are very high and overwhelming, and the support provided by the Estonian Health Insurance Fund and the local government is insufficient. The Children’s Foundation has therefore started to support Myroslav by helping to cover the costs of the child’s wound care and medical food.

The local government is helping to buy special clothes for Myroslav.