Our day starts before 9 am, we have two children and Zuzia is 3,5 she needs a lot of attention and of course care because she is not able to do a lot of things in this age. At 9 am every morning I feed Michal, I change his bandages, I need to cream his whole body, carefully clean his eyes, cream his eyes with a different cream. At 1 pm the routine starts again and it repeats every 4 hours, cleaning , creaming , feeding, new bandages, a bath. There are no hair on Michal's body and probably they will never grow and if they will they will grow only on half of his head, what is more he sweats a lot and this cause a threat of overheating or having a cold. Michal does not hear for now and we don't know will he every hear. His ears has not developed yet and there is some skin inside his ears which continuously grows. The skin all over his body grows 14 times faster than an ordinary person's skin. Every day we need to take the skin off during the baths by giving him a gentle massage. What is more the skin grows on and in his nose and we need to remove it gently because if we don't he may have breathing difficulties.

This is not an easy day routine but we love him with all our hearts and we want him to live.

One more time thank you for your support.

God bless you all.