Abdullah and Aishat are brother and sister. Aishat is 6 years old, Abdullah is 3 years old. The age difference is small, so they watch cartoons, draw, sculpture, make handicrafts and play with a friendly cheerful flock. And both children together every day make multiple, complex and long bandages. Aishat and Abdullah have bullous epidermolysis.
This is a serious genetic disease, in which the skin from birth is very fragile, from the slightest touch is covered with blisters, which, bursting, form painful wounds. They must be immediately disinfected and bandaged, otherwise the wounds are easily infected, which can lead to sepsis.
And dressing materials need special - soft breathable bandages, silicone pads, atraumatic wipes, alcohol-free antiseptics. Usual bandages do not fit - they stick to the skin and tear away with it, causing severe pain, and alcoholic antiseptics literally eat delicate skin. Dressing with good materials combined with the use of the right medications creates a protective cocoon on the skin, preserving its integrity and allowing children to lead more active lifestyles.
Mom has been able to make such dressing since the birth of Aishat. The diagnosis of her daughter was a shock to her mother, but she quickly came to her senses and learned to take care of her baby's fragile skin. The news about the second pregnancy made the family happy and excited - suddenly the second child will have bullous epidermolysis? The geneticist assured that this would not happen, but the mother felt with her heart that there was a reason for fear. Abdullah was also born a "butterfly".
Now the family has two children with the same diagnosis for two. This means that it takes twice as much energy and time to care for their fragile skin. And it takes twice as much money for special bandages and medicines. For example, the next purchase of dressing materials requires 300,000 rubles. This is a lot of money for the family, but to remain without such dressing for children is like losing the skin. In other words, it is unthinkable.
The Aishat and Abdullah families need and need all kinds of help. With this diagnosis, there are no small donations. Everyone will help children to live without pain, to move more, to play and enjoy life, and parents - to look more confident in the future.
