Hallo friends ,
My name is Zuzana. My husband's name is Peter. We live in the middle of
Europe, in small but beautiful country called Slovakia (about 5 million
We have got 3 children. Two of them Patricia(5) and Michal(3) are
healthy, but the second one Palko(1) suffers from Apert syndrome.
I will tell you everything from beginning.
We had just finished our new house and looked forward to our next
member of family. I had no problems during my maternity, and there was no
sign that with child is something wrong(I had 4 ultrasound
After Palko was born, we thought that problem with feet and hands would
be OK but the fear came one hour later when doctor entered our room and
told us about possible problems. She told us everything what was written
in encyclopedia (that our son could be deaf, blind, mental defective and
so on). We thought, that we would get mad, it was horrible for us.
We go home after 5 days and Palko was all right. After many
examinations doctors found out that Palko has no problem with the eyesight
and hearing. So you can imagine how happy we were. We wanted to know more
about that therefore we went to consultation to Bratislava (the capital of
Slovak republic). They told us about very rare illness and the urgency of
operation of the head which is not performed in our country. So they sent
us to country called Czech republic (our western neighbour). The cranial
surgery was performed in the seventh month of his life in Prague. We also
informed ourselves about plastic operation of the hands and feet Our son
has fusion of all five fingers together (the ring finger and the middle
finger - bones (osseous) fusion). The hands are in the shape of a
In the present we are waiting for first hand surgery.
We are thinking that our son is unique. He is so lovely and sweet, and
strong fighter (he is so perseverant, he repeats one activity till he's
successful). He is fond of water. He could swim all the time. He
likes eating, sometimes unusual, inedible things (toys of his older
brother and sister). Palko is interested in playing with brother and
sister. They love him very much and teach him new and interesting things.
He is so curious. Despite of syndactyly he is skillful. He is able to
catch small balls or shoe-lace.
We love our son very much and want for him the best solution.
We thank for establish of this web-site for helping children affected
with APERT syndrome. WE THANK ALL PEOPLE WHO HELPED US AND GIVE US NEW
POINT OF VIEW. WE HAVE FOUND OUT THAT THE MOST IMPORTANT THING IS HE WOULD
BE OK NOT ONLY IN COSMETIC REASON BUT HEALTHY AND NOT USELESS SUFFERING .
I have several problems with English, please excuse me.
WE WISH YOU ALL THE BEST,
Zuzana (PALKO's mom)
Contact e-mail: firstname.lastname@example.org