Help Sofoniyas control E.B.
Donation protected
Sofoniyas Wendmu Negash was born in June of 2014 in Addis Ababa, Ethiopia. Around the age of 3 months, his parents Kalkidan and Negash began to notice small random patches of irritated skin and blisters on his body. At that time doctors diagnosed his condition as a rash due to allergies but there was no clear cause of the blisters that occurred on random parts of his body nor the pain that the infant experienced in addition to the blisters.
Flash forward three years and the family is sent to Bangkok to see medical specialist in an attempt to determine what was causing the blisters on Sofoniyas's body. Doctors in Bangkok determined that Sofoniyas was suffering from Dystrophic Epidermolysis Bullosa. Dystrophic being a type of Epidermolysis Bullosa (EB), Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder. According to Debra of America, "There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. EB is ALWAYS painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB". - Debra of America. (Those suffering from E.B. tend to either be missing Collagen or Keratin which contributes to the condition).
Sofoniyas's condition requires constant care. As a result, both parents manage his wound care and are not able to work. This has left the family in dire financial straits, depending mainly on the kindness and charity of those who are aware of their situation to help them survive. In terms of physical supplies, the family is in need of medical supplies such as Medi-Honey (not found in Ethiopia), Dembero powder, sterile needles for lancing, loose fitting cotton clothing for a child (age 5 size recommended) and light weight breathable material children's shoes, size 31-32.
The primary reason for this campaign is to raise money for the Sofoniyas's regular care and supplies, medical visits and the family's day to day living expenses. The supplies given during the Bangkok visit have been exhausted and the family has been forced to improvise in terms of wound management. The need for funds is dire and the sooner donations are received, the quicker the family can acquire supplies for Sofiniyas's treatment and return to solid financial footing. Physical donations are appreciated as well. We are currently working on a way for supplies to reach the family here in Ethiopia on a regular and consistent basis.
Flash forward three years and the family is sent to Bangkok to see medical specialist in an attempt to determine what was causing the blisters on Sofoniyas's body. Doctors in Bangkok determined that Sofoniyas was suffering from Dystrophic Epidermolysis Bullosa. Dystrophic being a type of Epidermolysis Bullosa (EB), Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder. According to Debra of America, "There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. EB is ALWAYS painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB". - Debra of America. (Those suffering from E.B. tend to either be missing Collagen or Keratin which contributes to the condition).
Sofoniyas's condition requires constant care. As a result, both parents manage his wound care and are not able to work. This has left the family in dire financial straits, depending mainly on the kindness and charity of those who are aware of their situation to help them survive. In terms of physical supplies, the family is in need of medical supplies such as Medi-Honey (not found in Ethiopia), Dembero powder, sterile needles for lancing, loose fitting cotton clothing for a child (age 5 size recommended) and light weight breathable material children's shoes, size 31-32.
The primary reason for this campaign is to raise money for the Sofoniyas's regular care and supplies, medical visits and the family's day to day living expenses. The supplies given during the Bangkok visit have been exhausted and the family has been forced to improvise in terms of wound management. The need for funds is dire and the sooner donations are received, the quicker the family can acquire supplies for Sofiniyas's treatment and return to solid financial footing. Physical donations are appreciated as well. We are currently working on a way for supplies to reach the family here in Ethiopia on a regular and consistent basis.
Organizer
Jemal Countess
Organizer
Baltimore, MD
