Marek was born prematurely at twenty six weeks. He had a rough start struggling to get off the ventilator and needing heart surgery at two weeks old. He finally got home at five months old and we were told he would have severe disability, was unable to swallow and had hydrocephalus. He is now thirteen and in that time he has added an enlarged heart and heart murmour, uncontrolled epilepsy, chronic lung disease, bronchiectsasis, central hypoventilation syndrome and has had degeneration of his brain stem. He is oxygen dependant in the day time and ventilation dependent at night. He spends so much time in hospitals with infections and pneumonia it is his second home. Despite all he has gone through he has managed to learn to walk small amounts and talk just enough to get his own way and charm everyone he meets.
Currently he is in intensive care after he became rapidly unwell at home a week ago when his lung collapsed due to infection. It had on,y been ten days since he finished treatment for a previous infection and his body is struggling to have any recovery.