I am Hanno, 43 years young, father of a wonderful son (Tygo, 4 years) and partner of Rianne, who is my rock and the love of my life. I am an active and positive person. In December 2014 my life changed drastically when I was diagnosed with ALS. Since then I have dedicated my positive attitude and strength to living a meaningful life for as long as possible. For my own sake and that of everyone who is dear to me.
ALS is a severe disease that mainly involve the nerve cells responsible for controlling voluntary muscle movement, causing the neurons to deteriorate gradually. Signals from the brain will no longer reach my muscles, making them weaker and eventually lose their function. Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. Talking and swallowing became difficult for me quite fast after my diagnosis and my general fitness is decreasing at a rapid pace.
About stories and telling them
A treatment has become available that can give me time. This treatment has incredibly beneficial effects on swallowing and talking. Now that I am no longer able to take care of my son physically I completely rely on my voice. Through the treatment I will be able to communicate with my environment longer, that way I can continue to tell my son stories, read them aloud to him and tell him how much I love him, increasing the chance that he will remember my voice when he gets older.