Max has fought with every fibre of his being to reach four years old. He suffers from profound weakness in all his muscles affecting his movement, his development, his health and his breathing.
This however does not define him, Max has a fabulous personality and is a very happy, fun loving and sociable little boy with a side of stubbornness and strong will.
Max needs lots of support from us as parents as he needs 24/7 nursing care to support his respiratory needs via use of numerous machines (bipap ventilator, oxygen, cough assist, suction, nebulisers etc). He goes through periods of medical crisis often, resulting in numerous admissions to PICU/HDU throughout the year. However he also has incredible times of fun and laughter when he is healthy and well.
If Max had wish list it would not include anything materialistic, he gains immense joy from being surrounded by all his family and close friends, having cuddles, being loved, being tickled, and obviously farting and burping noises. The sounds of laughter could get no louder! He loves experiencing everything in life - going swimming, playing on swings, dancing to music, going to pantomimes and shows. He reminds us every day of what is important in life!