Hello, my name is Chloé

 

I was born in Biel (Switzerland) on the 19th of October 2018 as a "healthy" little girl, however it turns out I have Krabbe Disease. 

 

Krabbe disease is a very rare genetic disorder which I inherited from my parents. We all knew that Mummy and Daddy were soulmates, but the fact that they have the same genetic disorder, is just astonishing, it's like winning the lottery, just the wrong way around. 

 

During the first six months of my life my development was completely "normal" and I reached all important growth milestones, but after that everything went backwards. I couldn't hold up my head anymore, sitting became impossible and my body tension and motor skilled seemed gone.

 

The most hearbreaking moment for my parents, was when I lost my beautiful smile at just 17 months. This doesn't mean that unhappy though, I am sourounded by my family who knows that I am the strongest and most courageous little fighter on earth. 

 

The story of my diagnosis is a very loooong one. It took my doctor six months with endless hopital stays and many tests to finally confirm it what we feared so much. 

The most devastating thing was, that my parents got the diagnosis by phone (!!) in Decmeber 2019 when I was 14 months old. According to my doctor, my life expectation would only be a few months, but as I said, I am a little fighther with the strongest will, therefore I will not give up! 

 

With the help of my family and different ways of therapies we are all trying to make my everyday life as easy and comfortable as possible. 

 

I set up this site, to introduce you to my disease and well as present projects and ways to help me and my family during these challenging times. 

 

I am incredibly grateful for each and every donation, that helps me enlight all colors of my rainbow. 

 

Love, 

Chloé

My motto

"HAKUNA MATATA"

My favorite cartoons

My style

My music selection