Marijana Romanivna Harmatyuk (36), a pastry seller lives in Stovpchativ Village in the Ivano-Frankivskoblast region of Ukraine with her 12 year old son Mykola-Valentyn
The year 2022 became the HARDEST and the SCARIEST year for all Ukrainians and the whole of Ukraine. The war has taken and crippled the lives of many people. Each of us have suffered but each in our own way. Suffering, stress, and uncertainty – this is how we live in these times of war and martial law. Now we have dressing changes by candlelight or flashlight. This is due to constant power outages caused by Russia’s missile attacks on Ukrainian energy infrastructures. This is a challenge for us. We are constantly afraid of injuring our child’s fragile skin, and we have to spend 2-3 hours on dressing changes. We also have to think about cooking food, which must be blended otherwise our son will not be able to swallow it without choking. Missile strikes, shelling, and air raids make us feel helpless due to the fear of losing our loved ones. Life forces us to adjust to everything. We are strong, we will survive! We are not left alone in our problem; the entire WORLD supports us.
We received aid from the Red Cross Singapore and DEBRA International. It has been very useful and relevant because Epidermolysis Bullosa, our disease, knows no breaks or vacations. It is our personal WAR that continues from birth until now. Despite these difficult times, we have managed to try new wound & skin care products, vitamins, and supplements. It is nice to know that we are not alone. International aid is very important for patients with Epidermolysis Bullosa and for Ukraine in general. Together to Victory!