***Dear friends and family, we have just confirmed a case of the rare condition, Epidermolysis Bullosa or “EB” in a 3 year old child from Dese, Ethiopia named is Sofinias. According to his grandmother, Sofinias is a happy child in spite of his condition, constant pain and extremely limited contact with children his age. The family is in a rough spot as they need the medical supplies necessary for the day to day care of a child suffering from EB. In short these supplies consist of Sterile Gauze, needles for lancing, medical honey, aquafor or some other type of lubricating cream and cotton padding for areas of the body that endure heavy contact (feet, hands, wrist, etc).
Epidermolysis bullosa (ep-ih-dur-MOL-uh-sis buhl-LOE-sah) is a group of rare diseases that cause the skin to blister. The blisters may appear in response to minor injury, heat, or friction from rubbing, scratching or adhesive tape. In severe cases, the blisters may occur inside the body, such as the lining of the mouth or intestines. The condition makes for constant discomfort and sometimes immense pain. Presently there is no known cure, but research is constant and ongoing.
What can be done in the meantime is a regular regimen whereby the child would have his blisters lanced and drained, other wounds cleaned and treated with medical honey or a light moisturizing cream and then covered with a light cotton material or sterile gauze. This would take place two to three times a week. This is meticulous, emotionally demanding and sometimes tedious work but it must be done to properly care for the child and promote the healing of his or her wounds.
The toll is physical, psychological and emotional for both the child and the care giver. Having limited access to the supplies that would make the child’s life that much more easier is that much more difficult to deal with.
Due to many mis-steps and misdiagnosis, both parents are at home caring for the child and are currently not employed. The cost of medical care has exhausted their financial resources so donations would naturally be appreciated. I may set up a “Go-Fund Me” to assist with this.
Can I start by asking anyone traveling to Ethiopia in the next few weeks to inbox me if you are able to carry a small bag of medical supplies to Ethiopia for the family? If there are any of you are interested in contributing to the supplies needed in terms of the actual physical necessities inbox me as well for a complete list of supplies needed.
Whatever you can do is appreciated. Thank you for reading and even if you just spread the word I appreciate it.
