This year we found ourselves in a very difficult situation. Our son - Michal was born with a Harlequin-type ichthyosis which is a genetic disorder one of the rarest diseases with 100 cases around the world. He was born earlier in the 8th month and all of us with the doctors were surprised because the scans were all normal and nobody has expected it. The disease results in thickened skin over nearly the entire body at birth.The skin forms large, diamond-shaped plates that are separated by deep cracks.They affect the shape of the eyelids, nose, mouth, and ears, and limit movement of the arms and legs.Restricted movement of the chest can lead to breathing difficulties. These plates fall off over weeks. Other complications can include infection problems with body temperature, and dehydration. Michal can't hear and we don't know if he will be able to. As parents we were devastated because our child was given 2 days to live , then a week to live and in the end doctors said if he will survive the first year he may live few more... There is a high risk of infection and a lot of complications in the future. We also have a daughter who would love her little brother to live and be well. We need to take care of him 24/7, put some creams, give a lot of medications and we are terrified with every single movement not to hurt him. We originally come from Poland and would like our son to live surrounded with the family and love. We are here alone, my husband needed to quit his job because me as a mother was unable to take care of my child alone, I was devastated and felt it is not fair that he suffers so much... At the moment we are in a very difficult financial situation, have some people helping us but we would like to get the best private medical care for our son and one day take him back to Poland so he can spend his years with his grandparents, cousins, uncles and aunties. We would love to be with our family and surround our son with as much love as he deserves. Otherwise ...they may not have a chance to meet him. Please help us to raise some money for his medical care in the future and medical equipment he may need when he will be growing up.
Thank you for any support.