storia malattia di huntington testimonianza


I celebrated Mother's Day 27 times!

I still have a note that I printed in my heart: "You are the best mom I could have". In truth, at the beginning it was an all too easy game, even a 23 year old rookie like me would have won the prize for best mom in the universe!! I was enchanted and proud for every feat that my little girl accomplished with extreme naturalness and my ego conquered 100 fluorescent stars!!! When with skill and balance, she was skiing, I thought as a certified blunder "this one just can't be my daughter!!".

It was when her hand began to refuse to slightly conduct the violin bow, that the screeching on the strings produced out of tune sounds of music never heard before. The adolescent years were an upsetting whirlwind, that lashing wind moved us away and clouded our eyes. In an attempt not to be overwhelmed we looked for a hold, then another, groping and stumbling over precipices.

We found ourselves alone, looking for help that came like a ray of sunshine, a red thread to follow that that kept us from losing, but rather united us on the way without looking ahead but only admiring what surrounded us.

The disease was only a part, everything else was always there, for the taking. Take it or leave it!!! And we took it. Very skilled in the game of chess with Huntington, when it backed off, bewildered and intimidated before our love for life, we conquered time and that time we filled with trips to places we dreamed of visiting, enriched with friends, parties and incredible adventures. We walked steps that you absolutely had to count out loud every time, incredibly, after days of exhausting epileptic seizures, you just had to go out with lipstick, nail polish and sunglasses!!!

I became a mother little by little, letting myself be sculpted by that mistral, trying to smell the scents that she carried with her ... And she, my daughter, explored life with the strength and lightness of a butterfly.

storia malattia di huntington testimonianza