On September 4, 2011 my wife gave birth to our second child named Maria in Romania. Maria was born with a very rare disease, which is called Giant Congenital Melanocytic Naevi, a skin cancer that covers her entire chest until her knees both front and back. It approximately covers around 35% of her skin. She is one of two children born with this disease in all of Romania.
When she was 10 days old, she had surgery which removed about 50% of the affected area on her front side. However, she had an infection and they could not complete the rest of her backside. This was mostly becasue the doctors in Romania were not prepared to handle this kind of disease becasue it is so rare.
She has a high risk of developing melanoma on what remains on her body. At the same time the affected areas are black and she has large portions of hair grown on those areas.
The doctors recommend her to have an a skin transplant to heal this area. They implanted a termporary expander implant to grow the skin in order to replace the skin on the affected areas with this newly grown skin. This procedure can be done in Germany which will cost roughly $100,000 for this procedure.
Maria's procedure will take place in September 2017.
If anyone has any recomendation on other doctors or solutions to this, we would be very grateful.
Radio Report on Maria (In Romanian)
Video Report on Maria (In Romanian)
After the first successful operation, it removed a good portion of the tumor.