Our little boy. An only child, still very young. The oldest grandson for grandparents on one side, the youngest on the other.
We’re told he doesn’t have much left. We have to cherish him while we can.
Kuba is terminally ill. We have known since March 2015. Batten disease.
Be so kind as to watch our short video – we ask you to help us accelerate his therapy.
Every view means support for this unusual petition for life.
Since March 2015 we’ve been fighting for an experimental therapy – our only chance and hope… and also the biggest tragedy.
For even though a cure to stop this disease exists, it is currently unavailable to Kuba.
Life saving is losing a battle with keeping to procedures.
Rules can be broken in the name of evil, but they cannot even be bent in a good cause.
It’s a paradox. You can read more about it in OUR CHRONICLE.
Kuba’s life is in the hands of the people that make the law.
If it depended on those around us, everything would be different.
It is those “around us” that we thank for their unwavering support in every form that continues to surprise us on many occasions.

logo eurordisParents get together
In Paris, we have managed to unofficially make common front to line up with parents from Germany, the Balkans, Italy, Great Britain, France and Poland. On our side we have EURORDIS – The Voice of Rare Disease Patients in Europe. Maybe now, when we have been heard, we will finally manage to get to the hearts of the people.

An open letter to the President and the First Lady of Poland to support activity concerning child treatment in Poland. The letter was delivered to the President’s chancellery on 20.01.2015. On the List otwarty do Pary Prezydenckiej RPsame day, it was published on a Polish informational website natemat.pl. Download the letter A petition to BioMarin Pharmaceutical Inc. organized by the parents of Hanna from Germany A campaign entitled “I want to live – write to BioMarin” initiated by the parents of Olimpia from Poland

 

 

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