STAR child Lia sitting on a red slide.


This is the English version, you find the original version below

We are the Ammann family from Zurich, Switzerland.

Our wonderful Lia is the happiest and friendliest being we know. Lia loves life, people, swimming, sunny side-up eggs, bananas, bad pop songs, greeting strangers and clinking glasses with friends and family.

We first had the feeling that Lia might be different, when she was around 18 months old. Because of her lack of motor skills and the fact that she was so evidently much friendlier and seemed happier than any other child of her age. So, we consented to do a DNA test after being consulted at the Children’s Hospital in Zürich. We didn’t have to wait too long for the result. As for all the other parents, it hit us like nothing else we ever experienced in life: So many questions, so many thoughts, so little answers, so little perspective.

Today, we enjoy every day life and try to appreciate every moment with Lia , even when she’s rubbing pumpkin puree and cottage cheese in her hair as if it was a well-scented shampoo. We are especially happy to see how much progress she makes, she walks a bit stiff and shaky but from month to month better. She understands very much of what we are saying and the few words she knows, she’s not afraid to speak out loud and often every day. She speaks her mind and we’re always happy to listen. And most importantly, Lia can be a role model for us and anyone, with her joy for life and love for people.

This foundation and website is hugely important and helpful to us. It gave us some comfort to see all the other wonderful kids and families portrayed on this page, when Lia first was diagnosed. And the joint efforts and initiatives with all the dedicated scientists all over the world give us a reason to fight and maybe, just maybe, make the future for Lia a bit better, than projected.

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