The Courage of Children: Boston and Beyond XXXIII

AVERY HUGHSON
JEANINE STANSFIELD, TEACHER
Warren-Prescott K-8 School, Boston, MA
Courage. Courage is shown in many different ways. Some people run into
burning buildings, some fly into outer space, and others make controversial
speeches to advance important causes. All these people show courage at
moments in their lives. But imagine having to show courage every moment of
your life. Imagine having to show courage from the moment you were born,
from the moment you woke up in the morning to when you went to bed at
night. Imagine not having a choice but to show this courage. Imagine not
being able to speak, express your pain, feed yourself breakfast, or walk up the
stairs. These are some of the consequences of the neurological disorder Rett
syndrome, which my aunt, Jennifer Hughson, suffers from.
Rett syndrome is a rare genetic neurological disorder that affects one in ten
thousand females (and even fewer males) and begins to display itself in missed
milestones or regression at six to eighteen months. Rett syndrome leads to
severe impairments which affect almost every part of life, like the abilities to
speak, walk, eat, and breathe easily.
“WITNESSING SOMEONE
OVERCOMING THESE
CHALLENGES IS
WHAT OPENED MY
EYES TO THE IDEA
THAT COURAGE
CAN TAKE MANY
DIFFERENT FORMS.”
Witnessing someone overcoming these challenges is what opened my eyes to the
idea that courage can take many different forms. When I am with my aunt, I
feel inspired. I feel this way because I know that I am so lucky to be able to play
sports, and go to school, and do so many of the little things that we take for
granted. This helps me to look past moments when I am tired or unmotivated,
because I know that some people are not able to do the things that I am able to
do. This is what courage means to me: it’s someone or something that changes
the way you see the world.
My aunt was diagnosed with Rett syndrome at six years old. At the time, Rett
syndrome was not very well known, and my grandparents had to visit many
doctors before the diagnosis was made. I can’t even imagine how much courage
it would take to go through these types of challenges without even knowing
what was causing them. Once a diagnosis was finally shared, she was told she
might not live much longer. She persevered and is still going strong over forty
years later.
My aunt is severely disabled and can’t speak, walk, or even eat normally. This
means that everyday tasks can become very complicated. She lives with her
parents (my grandparents), and due to some recent complications, she now has
to eat using a feeding tube. Some of her greatest pleasures in life came with her
favorite desserts and favorite foods, and Rett syndrome has even taken those
from her. Despite that, she still brings joy and happiness to those around her,
day in and day out. I watch my aunt and am amazed by her bravery, and it
makes me want to be a better person, because I realize, through her courage,
how fortunate I am to be healthy.
THE COURAGE OF CHILDREN: BOSTON AND BEYOND
VOLUME XXXIII
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