A friend shares her thoughts...
Friend Shares Her Thoughts About Amanda Who Has Trisomy
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,
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
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
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.
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
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.
to Touching Our Hearts
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.