We are now launching an English version of the website, please give us more time to complete it. Below you will find short information and results of genetic examinations from Bristol.
Ania is now six years old and if we don't take action, in five years time
she may not be with us anymore. She is a beautiful, cheerful girl who may not
stand out in any way when you first see her. It’s only when you take a closer
look that you realise that even though she’s almost six years old, she looks as
if she was two. She has been diagnosed with Cockayne syndrome, a rare
neurodegenerative disorder characterized by growth failure, impaired
development of the nervous system and premature aging. In most cases, this
destructive disease leads to serious heart, liver and kidney problems as well
as hearing loss and eye abnormalities, which usually results in death in
the first or beginning of the second decade of life. Even though Ania can’t
walk on her own and doesn’t speak much, communicating with simple words and
signals she made out herself, she is a playful and smiley girl who brings lots
of joy into her parents’ lives. And her parents have been doing whatever they
can to make her life easier and happier – until now they have been spending
around 9 000 USD per year on various therapies, treatments and special medical
equipment (9 000 USD is a typical
annual salary in Poland). But they
have recently come across a clinic in the US which has been treating two
children with the Cockayne syndrome, achieving great results. The disease can’t
be stopped completely, but it can be slowed down to improve Ania’s quality of
life. The treatment costs around 60 000 USD per year, which is several times more than the annual income of the family. You can help Ania by donating to the Polish
charity “Zdazyc z pomoca”, Lomianska 5 street, 01-685 Warszawa
Bank BPH S.A. SWIFT
(BIC): BPHKPLPK
15 1060 0076
0000 3310 0018 2615
Please write: 17874
Starosolska Anna in the title of the transfer.
The donation also possible through the Foundation's PayPal account CalaNaPrzod.org
Etykiety: EN
