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HEALTH

His skin is thinner than the butterfly wings. 2

Sumy

started 8.4.2019

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

"The wounds that Misha receives are equivalent to the burn of II-III degree, this unbearable pain accompanies my son all his life, but we have learned to live with it," says mother Xenia. "When Misha wants to run, jump, play ball – he just tries not to pay attention to the pain and seeks to feel the joy of childhood. He is very strong in spirit, and despite such merriment, I always notice on his face that he has a wound, but he continues to play and assures that there is no wound, he smiles sweetly to me to assure of the truth of his words...".

Misha was born on September 8, 2009. He is a very cheerful boy and always wants to be first in everything, but unfortunately, due to illness, it is very painful for him not only to move but even to speak. Epidermolysis bullosa is a genetic disease that interferes with all dreams. This disease is also called the "butterfly" syndrome because the skin of a child is so vulnerable as the butterfly's wings – the butterfly will not fly anymore if you touch its wing...

This disease is very insidious. Due to the underlying disease, a number of related ones appear when not only the skin is affected, but also the oral cavity. Food should always be carefully knocked down and filtered, the esophagus narrows in the carriers of the disease, the eyes, the nasopharynx suffers the skin in the mouth drops, even liquid food is painful to take, there are problems with the cardiovascular system and in general the functioning of the internal organs. 

Last year, Misha underwent two operations to expand the esophagus, because the narrowing was already up to 1 mm. This did not allow the child to even swallow a drop of water. Such interventions are very scary, painful, risky, traumatic, the oral cavity is completely affected (after the operation, there was no mucous in the oral cavity at all), it takes a lot of time to heal wounds and restore the body. Caring for a child is very expensive, and mother Ksenia can’t provide her son with everything she needs by herself. Some materials are purchased by the state, some by the city authorities, but this does not cover 100% of the needs. Grateful for any support that will help alleviate the boy's suffering!

Earlier at UBB, we have already collected funds for Misha. View the previous project you can link.

 

Name: Sukhoruchenko Mykhailo, 08.09.2009

City: Sumy

Diagnosis: epidermolysis bullosa, dystrophic form

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Letter from Operator of Help


Certificate of birth


Invoice 1


Invoice 2


Invoice 3


Invoice 4


Invoice 5


Consultative conclusion 1


Consultative conclusion 2


Consultative conclusion 3


Extract from medical record 1


Extract from medical record 2


Extract from medical record 3


Extract from medical record 4