Amanda's Story: Trisomy 18

Over the years I have meet many wonderful people who have taught me so much. However, one of the lessons that I hold the most dear comes from a wee little girl who is only 15 months old. Through her life I have learned how important it is to always have hope. A little girl has taught me that there is someone out there that is listening to our prayers. In the spring of 2007, we were thrilled to find out that our dearest friends, Eric and Esmirna, were expecting a baby. Unfortunately just a few months later they gave us the news that they'd found out that their daughter had Trisomy 18 and that the prognosis was not good. However, they remained positive that things would turn out as they should. I would love to share Amanda's story with you in the words of her father, Eric.

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November 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 be back.

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.

Thank you,
Eric Cugurs, Father of Amanda

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I think that pretty much sums it up. Amanda is blessed to have such wonderful parents, and we are so blessed to know her. I hope to be able to share updates on her progress as time goes on. She's become like part of our family and we miss her now that she is so far away. She's in our thoughts often as she has touched our lives. I hope that she will touch yours as well. If you would like to contact Eric for more information on Trisomy 18 you can leave a comment and I will get in touch with him.