A little boy in Ethiopia has a rare, painful disease, and his parents are doing everything they can to keep him healthy, comfortable, and with them. A GoFundMe campaign is a great opportunity for all of us in the adoption community (or in any other human community) to preserve and support a family.
The child’s name is Sofoniyas, and he turned three in June. He was recently diagnosed with Epidermolysis Bullosa, or EB. It is a rare connective tissue disorder, the symptoms of which are extremely fragile skin that blisters and tears from even the smallest irritation (including clothing, or bumping, or falling, or touching). It is constantly painful. The care involves daily treatment of the blisters and wounds, along with pain management and protective bandaging.
In countries with top-notch medical resources, management of EB is challenging. In Ethiopia, children with EB often suffer gravely. Some die much too young. Some are separated from their families, and might get adopted, due to the difficulty and costs of treatment in country.
Both of Sofoniyas’s parents are currently involved full-time in his care. They do not have all the supplies needed to care for their son: sterile needles for lancing the blisters, Medi-Honey, loose clothing, sterile bandaging, doctor visits, and support for the family’s day-to-day expenses.
To help them, Jemal Countess, a dear friend of mine (and of Ethiopia, of children, and of those in need), who is a photographer with Getty, has set up a GoFundMe campaign for Sofoniyas and his family. Jemal came with us to Ethiopia in 2014, and took amazing photos and video. He has traveled extensively in Ethiopia and Africa, and always does so with a compassionate, unflagging heart. Jemal is currently in Ethiopia, and is helping to coordinate the delivery of supplies to the family.
Please contribute to this GoFundMe campaign, which will change the life of a vulnerable child and his loving parents. Please share the campaign widely. Many thanks.