, Research Paper
Alex: The Life of a Child
While reading “Alex: The Life of a Child” I
learned a lot about people. I learned a lot about how
different people deal with tragedy and death. Ths book is
the story of a young girl named Alexandra Defor. Alex was
diagnosed with cystic fibrosis when she was an inant.
I learned a lot about CF. Cystic fibrosis harms the
lungs, the pancreas, in males their it damages their
reproductive system, so they can never have children. CF
is a progressive disease. When both the child’s mother and
father have genes infected with CF in their body. When the
parents have a baby there is a one in three chance that the
baby will have the disease. CF is fatal and very
painful and hard on the patient and his or her family and
friends. Cystic Fibrosis can easily take over the victims
life. It seemed that Alex was in control of her illness. She
needed to receive painful physical treatment twice a day,
and a variety of medications. They never really seemed to
help Alex’s condition, and Alex and her parents questioned
the continuation of their use.
Alex was a very mature child. Most people perceived
Alex as a young adult. She dealt with her problems and her
disease, as well as she possibly could have. People
(parents, friends, doctors and just about everyone that knew
Alex) could not believe how well Alex managed to cope, and
how well she accepted her extremely bad luck. She lived with
reality with greater ease than her parents. Her only fear
was that when she would die her family: mother, father, and
brother, would not be able to continue because they would be
to depressed and in so much pain from her loss. That shows
that dispite of her misery, she was concerned for others.
This shows her unselfishness, sensitivity, and
thoughtfulness towards other people.
Alex had many wishes, but one main one. Her biggest
wish was that a cure would be found for CF
before she died. Her wish was denied. Alex never used her
disease to make people like her. Every one liked Alex. Alex
always smiled and used every bit of her time that she had in
a positive and constructive way. She always enjoyed herself
(except while she suffered pain from her therapy). Even when
she was in the hospital she made the best of what she had.
Alex dealt with the fact that she would die extremely well.
She never questioned why she was ill, and not her brother.
She lived with her condition with ease. She understood
everything about her illness.
I learned a lot about how people deal with death, and
how people deal with loss of unbelievably special and close
child. Alex’s parents wanted to give Alex a whole life’s
worth of living in the mere eight years that
she lived. Alex’s parents tried to fulfill all of her
wishes, while she was alive and after she had died. One of
Alex’s prayers which she recited every night, was to bring
children from poor countries to the USA. After
Alex died her parent’s knew they could not have another
child nor did they want to replace Alex. They adopted a baby
girl from a deprived country.
For a child who’s second home and room was in the
hospital she was a very happy and delightful child. She
seemed to always smile. Her cheerfulness and smiles are what
most of her classmates remembered Alex by. Alex never really
felt sorry for herself. In some occasions like one of the last times
she was in the hospital she did have sympathy for herself. Alex
wanted to be home in time for the holidays, since she knew this
would be her last Christmas alive. She was not able to leave the
hospital as early as she would have liked because her lung kept
collapsing, (but she did make the holidays). Right after the last
time her lung had collapsed, Alex was talking with her father, and
that was when she asked him-”Why does God hate me?”.
That was one of the only times that Alex felt sorry and bad for
herself, and questioned why it was her, why God chose her
and not some other child to have her terrible disease and her
harsh pain.
This story of Alex has made me think about many aspects
of life that we face each and every day like: life, death,
pain, joy, dealing with loss. I hope that other people
as much about people as I did from this book.
I realized by reading this touching tribute of a
father, to his late daughter that you should make the best
of what you have, especially when you know that you are
going to die in a very short time.
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