My name is Julia and I’m six years old. I live with mom, dad and my little sister Jade in Switzerland. Dad often takes me to the pool. I feel free in the water. Free to move without fear of tripping. And if my legs respond better in the water, my voice is better expressed in singing.
With Mom and Jade we dance and sing all the time, because when I sing the words come back to me and speaking seems easier, the language is looser, the memory more attentive. I also love horses, Dad and Mom used to take me for horseback riding since I was a child. My emotions, however, become more and more overbearing and I can not always control them: one day suddenly the fear has made room, taking over the enthusiasm. I could not stand this defeat and with difficulty and the support of my family, after almost two years, I climbed on the back of a horse, with the hope that that fear so dark will never return.
I am a lively and joyful child. I love being with other children, but not everyone can understand my way of expressing myself and my affection for them. I feel different and my heart feels it. But when they take me by the hand and run together, my heart jumps with joy and where it used to see boundaries, suddenly it sees horizons.
I really hope that soon they will find a cure for me and all the children with Sanfilippo syndrome. I fight every day against this bad disease but I feel my strength decrease little by little. I’m strong though and I don’t give up, I have a lot of desire to live. I’m sure together we can make this dream come true.