The story of Domen
My name is Domen and I am from Slovenia. I have a twin brother Jernej. We are born on the same day, but we are diffrent as day and night.
Although I have Canavan disease, my brother is a healthy boy. We are 21 years old, soon turning 22.
I am vwry happy person and I like if someone is stroking my hair and reading me fary tales. I feel great at hone, where they take care of me for 24 hours a day.
In Slovenia I am the only person with this diagnosis. When I was a baby, doctors said that this was a very difficult diagnosis. Life expectancy for Canavan disease is 3 – 7 years. When I was 4 years old, I got a gastrostomy (feeding tube) Since 2015 they have been feeding me with the help of Enteroport system, an internal nutrition pump.
My mum says that LIFE IS A MIRACLE ❤