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Emergency appeal for Ethiopian Brothers with E.B.

$1,520 of $3,000 goal

Raised by 29 people in 4 months
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)   https://www.amazon.com/Aquaphor-Healing-Ointment-Advanced-Protectant/dp/B006IB5T4W/ref=pd_bxgy_img_3/132-4867981-1685658?_encoding=UTF8&pd_rd_i=B006IB5T4W&pd_rd_r=3ef20a6d-3f64-11e9-978f-fb6c120e89ee&pd_rd_w=OyqZS&pd_rd_wg=pxcKT&pf_rd_p=6725dbd6-9917-451d-beba-16af7874e407&pf_rd_r=27MFZDASK7TQAPNYVG1J&psc=1&refRID=27MFZDASK7TQAPNYVG1J

Medihoney (large supplies are needed)  https://www.amazon.com/Derma-Sciences-31815-Medihoney-Dressing/dp/B00RDIO93G/ref=pd_ys_sarp_3?_encoding=UTF8&pd_rd_i=B00RDIO93G&pd_rd_r=HXZEWJXEFKYJH5EP4MAN&pd_rd_w=GJivg&pd_rd_wg=e0uOA&pf_rd_p=8328b5cc-59f9-4b32-ade0-718c89672d9c&pf_rd_r=HXZEWJXEFKYJH5EP4MAN&psc=1&refRID=HXZEWJXEFKYJH5EP4MAN

Coconut Oil (LARGE supplies are needed as it is used daily.  Organic is best)   https://www.amazon.com/dp/B00HNTPEWU?aaxitk=Vq7h0SqrlXC2QZtP1ylCOw&pd_rd_i=B00HNTPEWU&pf_rd_p=e037c154-e093-48a4-b127-477e5e294e3f&hsa_cr_id=7162687390301&sb-ci-n=asinImage&sb-ci-v=https%3A%2F%2Fimages-na.ssl-images-amazon.com%2Fimages%2FI%2F71zsxm3OqqL.jpg&sb-ci-a=B00HNTPEWU or a similar brand.

Medicated Gauze

Mepilex Transfer (can be cut to size needed)  https://www.amazon.com/Mepilex-MoInlycke-Wound-Care/dp/B07DNYTFNS/ref=sr_1_4?keywords=mepilex+transfer&qid=1551803818&s=industrial&sr=1-4-catcorr

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.
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On Saturday April 20th we delivered the nutritional supplies and vitamin supplements acquired in South Africa. In addition to the vitamin supplements and immune system boosters, we delivered additional aquaphor and Medihoney which should keep the family fully supplied until July of this year (2019). Lysol cleaner was also delivered to thoroughly clean and seterilize the environment. I then realized another issue complicating the cleanliness of the boy's living environment was the fact that the floors of the home are simply dirt floors covered in a thin layer of vinyl. After examining the entire home with the families permission I came to the conclusion that the family needs proper flooring. This is a slightly different undertaking then the main aim of this campaign and I am currently exploring what options we have in this regard. I will convey those findings once I have compiled the information and priced out that project for anyone who wishes to contribute.
In the interim, as I always love to share the bright moments in this journey, I was also able to acquire and present our two warriors with a soccer ball and shin guards. Children with EB are often limited to the types and intensity of recreational activities they can participate in. It gave me great joy to enable the boys to play ball and safely enjoy some of the same, simple activities most of us take for granted. The smiles we saw that day were unending and priceless.
With the June re-supply run quickly approaching I will keep you abreast of further developments as they occur. Thank you again for your much needed and appreciated support.
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I returned from South Africa on Monday April 8, 2019 with a small package of vitamins and supplements aimed at improving the immune systems of both Samuel and Nathaniel. Nutrition and protein intake have been a concern for a while now especially in light of Nathaniel’s loss of appetite and weight loss in the months prior to our meeting. The family and I as well as other supporters personally familiar with the family are working out a solid method of addressing the nutrition and wound care supply challenges our family is facing. South Africa was in my travel plans and gave us access to a healthy selection of the supplies we were seeking. In the long term we are continuing to map out a source of resources that may be closer to Ethiopia while also trying to cultivate relationships with suppliers here on the ground as well. This week will see the delivery of liquid immune support supplements, chewable vitamins (Samuels favorite) and a second round of Medihoney and Aquaphor. I hope to complete this delivery on this coming Monday the 15th of April, 2019. I will update you all after Monday and I/we again thank you for your contributions and support.
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The supply of Medihoney, Coconut Oil, Aquaphor and other wound care and maintainance supplies were delivered today, March 23, 2019. The two gallons of Coconut oil from a very kind donor and supporter of EB efforts was an instant hit with the brothers! Making it possible for them to have easily applicable daily maintanance at their fingertips was a special moment for me. In the states we take something as simple as Coconut oil for granted where as here in Ethiopia, quality coconut oil is terribly expensive and hard to come by in large quantities, but now they have 2 gallons of it which should hopefully last them for several months even with heavy use.
A quick review of lancing and bathing techniques were in order as we also delivered several topical antibacterial skin/body cleansers.

The entire family expressed their thanks for the supplies and YOUR kindness in deciding to support the efforts to better the brothers quality of life. Our next efforts will involve bringing additional nutritional supplies to the boys after I return from South Africa for an assignment. We will be acquiring multivitamins and suppliments for the boys' as we continue our efforts to improve their nutritional intake. All in all, today was an excellent day and one that I hope will begin better days for the brothers. Your support has been welcome and deeply appreciated and we hope you will continue to support our campaign as we ramp up efforts on all fronts to better the quality of life of these two dear sweet boys and their parents. Thank you again from all of us.
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TOUCHDOWN!!! The first round of supplies for Samuel and Nathaniel have arrived in Addis Ababa, Ethiopia!!! We are currently making arrangements to transfer the supplies to the family of the brothers and solidify our re-supply procedures with the parents and the family intermediary. Please join me in expressing sincere gratitude and thanks to Dr. Delgin for helping me to arrange a collection point and courier for this first round of much needed supplies. This first supply effort is going smoothly so far. Next update will hopefully be from the front porch of their home!
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$1,520 of $3,000 goal

Raised by 29 people in 4 months
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