|
Northeast
Center for Special Care is pleased to feature:
Its Not Who I Am
http://www.itsnotwhoiam.com/
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.
Its
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:
The
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.
|
When
you visit Its
Not Who I Am
you
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 outcome.
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.
Its
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
she noted:
Everyone
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 soon.
|
One
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.
We like to feature home-grown websites created by
individuals or family members that tell a personal story
about overcoming disability and obstacles. Its
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:
I
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.
|
And
what has surprised her about the work she does through Its
Not Who I Am?
Sara-Elizabeth said:
I
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
surrounds epilepsy.
|
What
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.
Disclaimer:
Reference in this web site to any specific
organizations, commercial products, process, service,
manufacturer, or company does not constitute its
endorsement or recommendation by Northeast Center for
Special Care.
Back
|
