Center for Special Care is pleased to feature:
Its Not Who I Am
At northeastcenter.com we are
always in search of unique sites that would be of
interest to our visitors and our community here at the
Northeast Center. Our website of the month for May is
unique and very special. It is a site created by a
thirteen year-old, and while wisdom bespeaks age and
experience, this is a unique young lady.
Sara-Elizabeth and her dad created the site we feature
this month: Its
Not Who I Am. Thirteen
year-old Sara-Elizabeth has epilepsy.
According to the Epilepsy Foundation, epilepsy affects
more people than Parkinson’s disease, cerebral
palsy, multiple sclerosis, and muscular dystrophy
combined. It affects 2.3 million people of all ages.
At the fragile age of sixteen months Sara-Elizabeth
had her first seizure. She experienced tonic-clinic
and partial complex seizures. By age two her seizures
had become uncontrollable. Because of the seizures and
the medication used to control them, Sara-Elizabeth
started pre-school in a special needs class and
required extra assistance up until the first grade.
Gradually, as her seizures were able to be controlled,
Sara-Elizabeth was able to get off medication.
Sara-Elizabeth is now seizure-free. She was able to
start living life like any young person her age and
today is a high honor roll student. Her story is an
excellent example of overcoming barriers and is a
story other young people with epilepsy should hear.
Having epilepsy, however, did bring stigma which even
someone as young as Sara-Elizabeth could sense, so at
age ten she became an advocate and an activist with
the purpose of changing how people with epilepsy are
perceived by society and how they see themselves.
Not Who I Am is a
website that tells Sara-Elizabeth’s story. It is
also an interactive site where other young people with
epilepsy (as well as their siblings, family members,
parents, and friends) can visit and learn about how to
move beyond being “someone with epilepsy.” It is
as much about self-awareness as it is about societal
awareness. It is about self-perception and societal
perception. Sara-Elizabeth reminds us that epilepsy
does not define the person who has it. She tells us:
main reason I started my website with my dad
was to help break the stigma that surrounds
epilepsy. This is very important, so people
will not judge those with epilepsy wrongly.
People with epilepsy are not any different
from people that do not have epilepsy.
you visit Its
Not Who I Am
will find some interesting sections. The home page
tells you about Sara-Elizabeth, the site itself, along
with current information, and some favorite links. The
menu takes you to other parts of the site.
This IS who I am is a feature of the site where
Sara-Elizabeth invites visitors who are advocates or
volunteers to share there own experiences about what
they have done to make a difference. Young people and
adults have shared experiences, such as an 8 year old
girl who sold lemonade over the summer and then
donated the money she made to breast cancer research.
Or, a young man who relates how he helped put together
packages with his church to send to our troops
overseas. This is really a wonderful part of Its
Not Who I Am
and there are many more experiences that you can read
when you visit the site.
Because adults as well as young people visit Its
Not Who I Am,
there is a section called Ask Mom, where
Sara-Elizabeth’s mom answers questions from visitors
and assists them with information, and dispenses
wisdom and advice from a mother who has been down a
difficult road with her child and has seen a positive
What’s happening Now lets you know what events
or projects Sara-Elizabeth is involved in, and Past
Happenings chronicles the past two years - as you
will learn she has been very busy! If that wasn’t
enough, in the section entitled My Acting, we learn
that Sara-Elizabeth has a passion for acting and
participates in a community theatre.
Not Who I Am
is a website that lets you peer into the life of a
young person with a disability, who is able to manage
that disability and live her life while growing up and
accomplishing many things. An important message
Sara-Elizabeth and her website send to all her
visitors is that stigmas should mean nothing; everyone
can have a full and independent life. That message is
emphasized through a real life example.
And people have reacted to Sara-Elizabeth’s story as
has given me positive reactions. This is great
because it mean that people understand my
position when it comes to epilepsy. I have
gotten emails from all over the country,
England, friends, relatives and strangers. My
dad explained that this is important that
others find out what I am doing to spread the
word, and this will help break the stigma
of the accomplishments of Sara-Elizabeth and her
family was starting an annual walk for Epilepsy.
Established in 2006 the first two walks raised nearly
$25,000. At the time of this writing a third walk is
scheduled for May 3, 2008 with money raised benefiting
the Epilepsy Foundation of Northeastern New York. You
can read about the walk as well as learn how to
participate or become a sponsor on the Its
Not Who I Am
website and you can even donate through PayPal
directly from the site.
Sara-Elizabeth’s story is also the subject of a new
book written by Chris Passudetti, and published by
Scobri Press. Its Not Who I Am - The Sara-Elizabeth
Story (the working title) is scheduled to be
released in September 2008. You can learn about the
book as well as its release on the site.
(2nd from left) at the 2008 Epilepsy Walk in
We like to feature home-grown websites created by individuals or family
members that tell a personal story about overcoming disability and
Not Who I Am
is a wonderful example of that kind of site and it has been attracting a
lot of attention. We asked Sara-Elizabeth what she has learned so far
from being an activist and advocate on the web? She told us:
learned that everyone has a voice and everyone
has a right to be heard, and we must all speak
up for what we believe in, or no one will get
the message and things will never move forward.
what has surprised her about the work she does through Its
Not Who I Am?
found it surprising that others, including
adults, cared about what I had to say and really
listened to me. Many asked questions and many
joined me in helping to break the stigma that
good work is being done by Sara-Elizabeth and her
family. Please take the time to visit Its
Not Who I Am.
You won’t be disappointed. It’s our website of the
month for May 2008 and they are just a click away; don’t
forget to bookmark them so you can visit again.
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