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HEALTH

Baby-butterfly: I want to live

Khmelnytskyi region

started 12.6.2019

Project is realized by
ICF "Center of social projects of the future"

For the first time, having heard the phrase "butterfly child," you imagine a serene insect among the flowers and the joy of childhood, which is devoid of bitter disappointments and anxieties. Meanwhile, the life of children with "butterfly syndrome" does not look like a fairy tale or an ideal picture. By the dreamy term, there is a "bullous epidermolysis" – a very rare hereditary disease, characterized by the formation of blistering on the skin and mucous membranes. At the slightest trauma, the skin is clogged. The pain that a child feels, in this case, is hard to imagine.  

The disease also affects the Daisies. The girl is only 5 years old, and her childhood is already full of pain and limitations. Parents are trying to do their utmost to avoid despair and provide their baby with the necessary medicines and dressing materials that are very expensive. An average person is even hard to imagine the scale of tragedy: from the smallest minor trauma comes down bumps, bursting and clogging. Wounds must be treated immediately with ointments and antiseptics. And the body, especially the fingers interrupted, otherwise grow. "I really want to ease the child's pain. See how she rejoices in life", says mother Vita.

The procedure and bandaging of wounds take a lot of time, the procedure is extremely fragile and difficult, both physically and morally. If you do not regularly treat the wounds, they will begin to bleed and wrinkle! And there is a danger that limbs may grow: fingers on the arms and legs. Margaryta is constantly in need of vitamins and appetite supplements, ointments and special bandages that do not dry up into the skin. All these drugs are imported and very expensive, without the help, the family alone cannot cope.

The family is glad and grateful for any help, children with bullous epidermolysis for all Ukraine only about 200, even a small contribution can be extremely weighty.

 

Name: Mashuk Margaryta, 20.05.2014

City: Netishyn, Khmelnytskyi region

Diagnosis: epidermolysis bullosa, dystrophic form, esophageal stenosis

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