Purple Day does more than raise awareness of epilepsy

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Purple Daydoes more thanraise awareness of
epilepsy
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• Families bereaved by sudden death in epilepsy
  (SUDEP) share
• what Purple Day means to them.

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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, Ollys sister
Olly Mullin, age 31
4
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!! He is sorely missed, and will ALWAYS
be remembered on this day!! Colleen Elliott,
Brians Mum
Brian Joseph Elliott, age 14
5
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,
Nevaehs Mum
Nevaeh Danae Bishop, age 9
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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, Danas Mum
Dana Frost, age 31
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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. Rachelle Comer, Tylers Aunt Robertas Niece
8
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, Jamies Mum
Jamie Van Nostrand, aged 30
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Purple has become a way to celebrate our
daughters 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. Its a tragedy that we
learnt about SUDEP too late. Wendy Tobin,
Chelseas Mum
Chelsea Tobin, age 23
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We were so relieved to learn, after her first
seizure, that Lisas 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
Lisa Montanera, aged 25
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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, Tylers Dad
Tyler Stevenson, age 20
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Purple Day is a day we particularly remember
Jays huge smile and all the joy he brought to
our lives. We miss him every day!! Arlene
Rightsell Jays Mum
Julian B Veyna III, age 27
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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. Although epilepsy (SUDEP) claimed
her in the end, she never let it define her and
she lived a rich, fulfilling life. Sue Shields,
Keelys Mum
Keely Marie Shields, age 23
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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, Jordans Parents
Jordan Fawcett, age 15
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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. 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, Tracis Husband
Traci Cleverley Pink, age 39
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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,
Ricks Partner
Rick Berg, age 47
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Being informed of ALL the risks associated with
epilepsyand working with your healthcare
provider to prevent seizuresis 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.
Please help to raise awareness of epilepsy and
SUDEP by wearing purple this Purple Dayandby
helping to encourage its discussion

• For more information about SUDEP
  www.sudepaware.org
• For more information about Purple Day
  www.purpleday.org