Butterfly Children: delicate life requires special care

31 august 2015

International Children Charity Foundation "Chance" initiates a project on the crowdfunding platform GlobalGiving to help children from Belarus suffering from Epidermolysis Bullosa and daily need expensive medical supplies. Our project aims to raise funds for twelve children with severe form of the disease.

Epidermolysis bullosa (EB) – is a group of rare genetic diseases that are manifested in the particular vulnerability of the skin to external influence. Touching the skin leads to blister formation revealing the wound surface.

There are so many classifications and subtypes of EB that almost every medical case is unique. The disease is systemic - not only the skin is affected, but there are also ophthalmological, gastrointestinal, otorhinolaryngological manifestations.

Children suffering from genetic diseases face challenges at every turn. Children with EB are also known as Butterfly Children because their skin is as fragile as the wings of a butterfly. The correct diagnosis and timely medical care help to ease the pain, but this is only the first step in a long journey.

In addition to the medical advice and assistance of qualified professionals Children with Epidermolysis Bullosa need expensive lifesaving medical supplies, wound-healing substances, medication support and proper nutrition. All this requires substantial material costs.

Ministry of Health of the Republic of Belarus provides consumables for children born with Epidermolysis Bullosa, but it is not enough. Only the use of special atraumatic tools allows painless proper skin care of a sick child.

Unfortunately, genetic diseases are incurable. In countries that have adopted the state support program for patients diagnosed with BE the Butterfly children grow up, get education, work and have a family.

For several years Children Charity Foundation "Chance" helps children with EB with the purchase of medical supplies, organization of medical examination in the Freiburg Centre for Epidermolysis Bullosa. Among those we have supported already are our wards Fedor Kaminsky, Daria Smashnaya, Anton Furs,Petya Nadtochij.

Twelve is a number behind which are children that can be alleviated from suffering. We intend not only to help them and their families, but also spread information about the existence of this problem and its need in public support.

The more we talk about BE throughout the world, the more opportunities get open to those who yesterday could not even imagine to go out. Sometimes getting rid of pain is also a miracle.

To support the project, please visit GlobalGiving.