Ulyana was born in April 2021. At the third screening, doctors found malformations of the limbs in the fetus, and after birth it became clear that the girl had a whole range of health problems.
It took a month in neonatal pathology for Ulyana to get stronger, learn to eat on her own and undergo examinations. After discharge, the family continued to search for the causes of the girl's condition: Ulyana grew slowly, gained weight poorly, and then constant peeling of the skin was added to this. A complete genetic analysis revealed that the girl has a rare syndrome affecting the bone system, height, eyesight, skin and increasing the risk of serious diseases. One of its manifestations turned out to be ichthyosis, a diagnosis in which the skin cannot exfoliate normally and is unable to retain moisture.
The skin with ichthyosis is over-dried, tightened, itchy, flaky and covered with painful cracks, through which infection easily enters. Due to itching, Ulyana often combs herself until she bleeds, and this starts a cycle of inflammation and pain again. To protect her skin, daily multi-step care is necessary: gentle cleansing, intensive moisturizing and special anti-inflammatory agents.
Despite the severe diagnosis, Ulya is an active, cheerful child. She loves to draw, glue stickers, "cook" in her small kitchen and watch Masha and the Bear. She enjoys chocolate, ice cream and new toys, just like any child.
We collect funds for creams, ointments and emulsions, without which it is impossible for Ulyana to feel comfortable in her skin. It is in our power to alleviate her condition and give her a life without pain and constant painful itching.
Verified by Tooba
Verified by Tooba
