Transcript Document

Purple Day
does more than
raise awareness of epilepsy
Families bereaved by sudden death in
epilepsy (SUDEP) share
what Purple Day means to them.
Purple Day is a day of worldwide
recognition and applause for each
and every person living with epilepsy
and their families;
a day that strongly reminds us we are
not alone with our epilepsy or its
impact;
a day of remembrance and
celebration of the treasured lives of
our loved ones lost to epilepsy;
and, a day of shared hope, that we
will someday come to better
understand epilepsy and that we will
succeed in reducing the number of
lives lost to it.
Tamzin Jeffs, Olly’s sister
Olly Mullin, age 31
Purple Day is a VERY important day
for my family. My husband and
youngest son live with epilepsy every
day.
It also is a day to honor my eldest son,
Brian J Elliott, who passed away from a
seizure on July 25, 2012.
He was a unique young man, who
loved baseball, The Beatles, John
Lennon, his family, friends and his
community!!
Brian Joseph Elliott, age 14
He is sorely missed, and will ALWAYS
be remembered on this day!!
Colleen Elliott, Brian’s Mum
Purple Day means we are making
an important step in bringing
awareness and understanding to
the gravity of epilepsy. This gives
the opportunity to bring public
attention to the possibility of
SUDEP occurring.
SUDEP is a terrifying thought,
but with this fear comes
enlightenment.
I would rather have been informed
of SUDEP, than to have been left
feeling like we had been kept in
the dark on something so
important.
Natassia Feather, Nevaeh’s Mum
Nevaeh Danae Bishop, age 9
Dana Frost, age 31
My life was forever changed on
December 30, 2008 when I lost my
only child, daughter Dana, age 31, to
SUDEP.
For me, Purple Day represents hope
that through research one day,
hopefully very soon, epilepsy will be
better understood and a cure will be
found.
No parent should ever have to
experience the pain of losing a child.
Maria Frost, Dana’s Mum
Purple Day is important
because it is bringing
awareness to epilepsy.
Most people don't know how
serious it really is.
Knowledge is important. The
more you know, the better
you can understand it.
Tyler Comer, age 13
Rachelle Comer, Tyler’s Aunt & Roberta’s Niece
Roberta Jenkins, age 33
Jamie Van Nostrand, aged 30
Purple Day helps us
to know we are not
alone in our sorrow,
and not alone in our
loss.
A quiet hug goes
round the world
and offers comfort
no words can ever
express.
Anne Van Nostrand,
Jamie’s Mum
Purple has become a way to
celebrate our daughter’s life
and memory, as well as to
raise awareness of epilepsy.
We wear it every day.
We share our loss and
encourage those living with
epilepsy, including our other
daughter, to educate
themselves and do everything
they can to reduce their risk.
Purple Day is just one day of
the year. Epilepsy needs to
come out of the shadows all
year long. It’s a tragedy that
we learnt about SUDEP too
late.
Wendy Tobin, Chelsea’s Mum
Chelsea Tobin, age 23
Lisa Montanera, aged 25
We were so relieved to learn, after her
first seizure, that Lisa’s epilepsy was
mild and “benign”….. easily controlled
with medication. She saw her
neurologist regularly, complied with
instructions on medications and
lifestyle, and her seizures all but
disappeared. We thought Lisa was
safe….. her condition just a minor
inconvenience. We were very wrong.
Our beloved daughter and sister Lisa
died suddenly in her sleep on January
18, 2012 at the age of twenty-five. If
someone like Lisa is at risk, so is
everyone with epilepsy. Purple Day
draws attention to, and advocates for,
research and funding to solve the
mystery of SUDEP.
Mary Lou, Walt, Mike, Chris and Dan Montanera
Purple Day is international
recognition that epilepsy is real and
it impacts millions of lives
worldwide.
Purple Day is also a day to
remember my 20-year old son Tyler
who passed away from SUDEP in
January 2011. On March 26th, as we
recognize those who live and who
have died from epilepsy, it is
important to understand the impact
to the individuals and families
affected and the many challenges
that they face each and every day.
Purple Day is only one day a year,
but epilepsy lives and breathes every
day of the year and it will take
awareness and advocacy to bring
about an understanding of, and
hopefully a cure for, this often
unspoken medical disorder.
Mark J Stevenson, Tyler’s Dad
Tyler Stevenson, age 20
Purple Day is a day we
particularly remember
Jay’s huge smile and all
the joy he brought to our
lives.
We miss him every day!!
Julian B Veyna III, age 27
Arlene Rightsell
Jay’s Mum
Keely was larger than life and people
were drawn to her. Her grace, laughter
and light brought joy to others.
Her favorite color was purple and
Purple Day makes us feel closer to her
as it reminds us of her funeral, where
the majority of over 1,000 people who
gathered to honor her life wore purple.
Keely Marie Shields, age 23
Although epilepsy (SUDEP) claimed her
in the end, she never let it define her
and she lived a rich, fulfilling life.
Sue Shields, Keely’s Mum
On Purple Day we will wear our
‘purple’ proudly to honour those
living with epilepsy, and to help
create awareness of SUDEP.
Our ‘purple’ will shine brightly in
memory of our beautiful daughter
Jordan, whose life was mysteriously
and tragically taken at age 15 to
SUDEP.
It is our hope through raising
awareness that we can help save other
families from having to endure the
pain we must live now.
God, bless those who need you, and
hold those we have lost safely in your
arms until we can hold them in ours
again.
Deb & Dave Fawcett, Jordan’s Parents
Jordan Fawcett, age 15
My wife Traci Cleverley Pink lived with
epilepsy from a young age, but she never
let it dominate her life.
Considering that her seizures were largely
controlled through medication, her death
from SUDEP in November 2011 at the age
of 39 came as an utter shock.
Traci Cleverley Pink, age 39
Hers was a compassionate, generous soul
and she left a large hole in our community.
I pray for the day when no one suffers the
devastating loss of a family member from
SUDEP, and thank the organizers of
Purple Day and the SUDEP Aware team
for continuing to spread awareness about
epilepsy and SUDEP.
Doug Cleverley, Traci’s Husband
April will mark three years since I
lost my partner Rick Berg to
SUDEP.
Not a day goes by that I don't
miss him or think about what he
is missing in not being here with
his family and friends.
I hope that, through the efforts of
raising awareness of epilepsy
worldwide, we are able to unlock
some of the mysteries of this
condition and help prevent
premature death in others.
Love and miss you RB.
Martha Bennett, Rick’s Partner
Rick Berg, age 47
Please help to raise awareness of epilepsy and SUDEP
by wearing purple this Purple Day
and
by helping to encourage its discussion
Being informed of ALL the risks associated with epilepsy
and working with your healthcare provider to prevent seizures
is the best way to reduce the risk of death from epilepsy.
Please help by sharing this message with your family and friends living with epilepsy.
For more information about SUDEP: www.sudepaware.org
For more information about Purple Day: www.purpleday.org