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Emergency appeal for Ethiopian Brothers with E.B.

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Yesterday, on March 4, 2019 I met two children here in Ethiopia who are suffering from Epidermolysis Bullosa. The two brothers I meant, Samuel and Nathaniel, ages 7 and 13 have been surviving in Addis Ababa with inconsistent medical treatment since birth. The only children of Tigist and Eyob, the brothers have lived a very rough life as their condition was originally diagnosed as Leprosy and had been treated as such for some time.  With only 2 other cases of EB ever having been recognized and diagnosed in Ethiopia, the doctors and care takers who have attempted to treat the boys over the years were treating the boys with measures that in some cases exacerbated their conditions.  As a result of improper treatment, lack of and access to adequate supplies and at one point no significant care at all, both children are suffering from infections of wounds, complete skin loss in some areas of their bodies and severe loss of appetite. The factors, along with compromised immune systems have left the boys in a precarious state.  

These children desperately need supplies to clean wounds, moisturize and treat their skin, promote healing and to maintain a proper, balanced diet while ultimately improving their quality of life in every way possible.  

First, for those unfamiliar with the condition, let me define Epidermolysis Bullosa or “EB” as it is commonly called.  According to Debra International, "Epidermolysis Bullosa (EB) is a group of rare genetic skin conditions, which is characterised by extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma.” They continue…."The skin has two layers; the outer layer is called the epidermis and the inner layer the dermis. Normally, there are 'anchors' between the two layers that prevent them from moving independently from one another. In people with EB, the two skin layers lack the anchors that hold them together, and any action that creates friction between the layers (like rubbing or pressure) will create blisters and painful sores. Sufferers of EB have compared the sores to third-degree burns.” - Debra International

Given the condition of both brothers, considering the nutritional challenges and serious infections present on both brothers, this is an emergency appeal.  I am assisting the family in acquiring supplies.  We are wanting to gather supplies at a strategic location on the Eastern Seaboard of the United States and provide airfare for a courier to retrieve the supplies from the collection point to be determined probably in the Washington D.C. or New York Area.  

For those who want to donate supplies we are in need of the following:

Aquafor (large supplies are needed)

Medihoney (large supplies are needed)

Coconut Oil (LARGE supplies are needed as it is used daily.  Organic is best) or a similar brand.

Medicated Gauze

Mepilex Transfer (can be cut to size needed)

For those wishing to donate funds please use this link ONLY.  Due to security concerns we are only doing donations through this platform.  Anyone in Ethiopia who cannot access GOFUNDME and wishes to donate we are making arrangements for a SECURE LEGITIMATE collection point that will have resources go directly to the family. 

Those wishing to donate towards the price of transportation for the courier to retrieve and deliver the supplies we are estimating that the cost of the ticket will be $1100 US or less if utilizing Ethiopian Airlines or Lufthansa.  The cheapest option will be used in order for all funds outside of airfare to go towards supplies.  

We are hoping to make the first supply run by March 15, 2019.  Our goal is to give the family 6 months to a years supply of the neccesary supplies mentioned above while we cultivate supply lines of these materials from Europe or South Africa. In the meantime a good samaritan delivered some supplies before contacting me but these supplies will not last through the end of March.  Please donate in any way you can.  We are looking to improve the quality of life for these two lovely boys who have been languishing for some time now and desperately need relief.


Jemal Countess

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