About us

On 23 February 2011 our son was 2 years and five months old. On 23 February 2011 in the afternoon we received the confirmation of the diagnosis of our child's disease. The name of the disease sounded like a death sentence. Mucopolysaccharidosis. Type II.

On 23 February 2011 our world collapsed ...

From the only easily accessible source of information, namely the Internet, we learnt that our child will suffer a lot, that there is no cure or treatment and that he will not live long enough to become an adult.

We spent more and more time searching for information. About the disorder, about the treatment, about the therapy. About hope. When a month later it turned out that there there is a possibility of enzyme replacement therapy new questions arose: is there any hope after all? How long will we wait for the treatment? How fast will the disease progress? How to rehabilitate the child? Which kindergarten should we send him to? What kind of support can we count on and finally – how to manage our further life? Looking at each other we kept asking helplessly: what should we do next?

We also kept thinking that we should do something for those parents who will face the same problems in the future. After two months we decided to set up a foundation.

Our project became reality on 11 July when in a notary deed we established a charitable foundation for the patients suffering from rare diseases, in particular those affected by Mucopolysaccharidosis. We called it "Knowing How to Help

© Przemysław Racinowski