12, 2007. Amanda Josephina Lopez-Cugurs is born into
this world. A very special baby girl, special to me
because she is my first and only child, special for
my wife as she is her first daughter, special in this
world because she has Trisomy 18.
Trisomy 18 is a very scary
diagnosis. The medical profession classifies this condition
as incompatible with life. You are lectured over and
over about the fact that these babies most often do
not survive birth or live a very short while. They are
born into this world to suffer. It is suggested to you
to terminate the pregnancy.
We chose not to, we researched
this condition, got in contact with parents of children
who have or had this condition. We put our faith into
our God that he would help us get through all of this.
And besides she was our baby girl and nothing was going
to change that. She would get all our love and care.
On the day Amanda was born we put our faith into her.
Amanda would guide us from here on. She would guide
us. My wife said to Amanda on the second day “It
is up to you if you wish to stay or leave. If you stay
there are many people here that love you very much.
If you decide to leave there are many people up there
that love you just as much”.
The medical staff painted a
grim picture. She would not make it through the night,
prepare for the worst. She made it through her first
night. The next day did look grim; we decided to have
her baptized in the hospital. By the end of the week,
on morphine and little food we decided to take her home.
We cared for and nurtured her.
Day by day she grew stronger and stronger. She had made
her decision to stay with us.
Amanda will be celebrating her
first birthday very soon, she already spent her first
Christmas with us, and we are looking forward to her
second Christmas with us.
There have been few complications
with Amanda, despite her VSD and PHT, which are quite
normal to have with Trisomy 18 she is a healthy and
very happy child. Just recently she was hospitalized
for two weeks to treat a cold and viral infection in
her kidney, but she is back home with us and happy to
We do not know how long we will
have her with us, this is why we try to make the most
out of every moment of every day that we have with her.
Amanda has made us stronger both physically and emotionally
not to mention spiritually.
The bond we have with her is
so strong. When you have a child with a terminal illness
and require so much from you it can be quite draining.
It is very draining but we devote ourselves fully to
her care. We see a very happy child, she recognizes
us, and she laughs and smiles. Amanda brings so much
love and happiness like you cannot imagine. We treasure
every moment with her. She has made us much more aware
of what it is to care and love someone. We would not
want to change anything about her, well except her trisomy,
and that is impossible. We have learned to accept his
fact about her. She is our baby girl and deserves all
our love and care which we provide willingly.
We have learned that these children
deserve to live as we all do. It is not up to us to
decide otherwise. They bring you joy and they love you
just as much.
We would love to share more
stories about Amanda, what we went through during her
pregnancy and even our interactions with all the medical
professionals and institutions that we had to deal with.
Feel free to contact us if you want to know more.
Eric Cugurs, Father of Amanda
to Trisomy 18 Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.