My name is Juliano. I live in Săo Paulo, Brazil. I'm married and the name of my wife is Ana Carla. We have 2 children, Igor is 2 years old and 5
months and the youngest is Nícolas. In fact, my
anguish started on july of 2004, when we^Ňve made the first prenatal exam
to check if everything was normal with our baby. It was identified a
discreet water increasing on our baby^Ňs head and twisted feet. During the
prenatal exam the water didn^Ňt increase anymore and it was made each 15 days. The doctor also requested a genetic exam which didn^Ňt identify
syndrome of down. On November 30th, 2004, Nícolas was born. Since that
date, our suffering increased, since Nícolas was born with lack of muscles
tone and an inability to move, besides of difficulty to suck, swallow and
hear. The Dr. put a tube in the Nícolas^Ňs nose in order to eat. It was
made a magnetic resonance of the brain which identified many structures
changes. The Doctors have requested a Metabolism exam which identified
peroximal changes (C26), which let the doctors believe the problem was
Zellweger Symdrome. The Doctors informed us, that disease was rare and
there was no cure. Nícolas is taking some medicines (Fenobarbital) to
avoid convulsion and using a tube in the stomach to eat.

Some times we get sad that we don^Ňt believe that god exist. But,
the support we received from our family and friends are over our sadness.
The doctors informed us that Nícolas could live for 6 months only, but we
believe that with faith and much physiotherapy, Nícolas could live for
many years.

I love Nícolas and want to help to discover the cure for the ZS.

Regards, Juliano.

******************************************

Nícolas died March 29
Nícolas is an angel and today he is seated to the side of the
Gentleman. Nícolas was a gift of God.

Love to all for the great aid that was given me.

Juliano