Our son Dafnis was born in 1998, covered with lots of nevi. Within a month he went for surgery to remove as many nevi as possible. In his early childhood he has had four surgeries. Each surgery about twenty nevi (different sizes) were removed. After his third surgery complications started to appear. He seemed allergic and developed eczema. He had problems breathing, but no one understood what was happening, leaving me startled. I now realize he was having seizures, caused by NCM, we did not know. He overgrew some of his allergies and his seizures. He became a joyful kid filled with energy and with a good sense of humor. If I were to interpret his meaning of life, his goal would be to make people happy. He could make people smile and laugh. Teachers, classmates, neighbors, friends were fond of him. He always had a smile on his face and a twinkle in his eyes. At home we saw his other side. He struggled with his allergy (dairy free diet and being asthmatic) and neurological problems (speaking disorder and problems with fine motoric). He could be very angry over little things. We now know cysts had developed during his life in his head and around his spinal cord. He never complained, but it must have given him some kind of pain or tension. In January 2012 he came home from school very nauseous and dizzy after sport class. It was the beginning of a tough six month fight against NCM. Even when being sick he didn’t lose his sense of humor. Family, friends and school enjoyed his presence as much as possible. Medical staff loved him and gave him wonderful support. He told everyone importance of enjoying life. In July 2012 he lost his battle and we had to say goodbye. His last wish was not to be forgotten. I appreciate you reading his story and having him in your mind.

By Marjolein (Dafnis’s Mum) Published 2013

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