disease my family never heard of
my parents were very supportive of my
decision to talk about this horrible
disease
from there i spoke at a fundraising
event in toronto in the huntington
society of canada's annual meeting in
charlottetown last year
i never imagined that speech would end
up bringing me here speaking with you
today
i remember the day my parents sat my
brothers and i down and told us about
our dad it was exactly three months
after my dad was diagnosed
they had a very difficult time deciding
on when and how they were going to tell
us the news we knew something was up we
knew something wasn't right with our dad
we were very happy to hear what was
going on
then my mom continued to tell us that hd
was hereditary and that my brothers and
i are at risk of this devastating
disease
my dad was the first diagnosed case in
his family my dad's biological father
left the family when he was young and my
dad's grandfather died in world war ii
none of these men knew that they were
passing down this disease
my mom made sure that she we realized
that there are several doctors and
researchers like yourselves helping to
find a
cure since that day back in 2006 our
family has been keeping a positive
attitude about our situation
not to say that we don't have our bad
days but we trying hard to keep positive
hd sucks
i was trying to find a better word that
could sum up this disease and how i feel
about it but i couldn't think of a
better word i even tried looking it up
on the internet for a more descriptive
word and had no luck
but i do have other words that describe
hd family friends hope determination and
dreams
family we have such a great supportive
family and extended family with a
disease like hd i can't imagine how my
parents would have coped with everything
without the support of my grandparents
aunts uncles and cousins
my grandparents helped look after me and
my brothers when my mom's at work
and they also help with clothing that's
needed throughout the year
my aunts and uncles help support us in
our fundraising events and even surprise
us with school supplies so my mom isn't
worried about finding the money to
purchase all of that
my cousins have birthday parties where
they ask for donations for hd instead of
presents
friends we are so lucky to have so many
friends that care about this us and help
us through this from our wonderful
neighbors that are always there for us
and spoil us to my parents long time
friends that no matter how far away they
live they always make sure that they're
there for us
my mom makes sure that
my mom works with a wonderful family
that makes a donation to hd every
christmas we're very lucky
we've received so much support from my
friends at school even my teacher last
year decided to have a fun fair to raise
money and awareness of hd
hope
my mom will never let us forget that we
have hope hope that a cure will be found
soon she makes sure that we're always
thinking positive and not to let it get
us down when i'm feeling down my mom
tells me a saying that her grandmother
told her
yesterday was history tomorrow's a
mystery and today's a gift
determination
i'm determined to raise awareness of
this disease my brothers are determined
to raise money for a cure and my dad's
determined to stay healthy and strong
and while my mom's determined to survive
it all
dreams i dream of going to university
getting married having children and
having my grandchildren grow up in an hd
free world
watching my dad go through this has been
really hard
my dad has good days and bad since 2007
my dad can no longer work or drive which
makes it difficult on my mom with three
active kids in the house
hd has also made things financially
difficult for my family since my dad can
no longer work we are lucky to have a
family that
we are lucky to have family that helps
us when we need it
but we still have to make several
sacrifices we can no longer take music
lessons swimming lessons play organized
sports or go on any family vacations
it's been hard but there's times where i
can't believe the kindness of others
back in may i spoke at our school about
huntington's disease and how our family
situation has changed
i talk about how our fam
i talk about our family
after my speech my brother eric was very
excited about the response he received
from the girls in his class they were so
worried about him having hd they
couldn't stop hugging him
he said it was the best day ever well
that's a 12 year old boy for you
but also one of the teachers came over
and talked about our family's situation
and invited us to join the st thomas
ball hockey league ms zufelt and her
husband ran the league each year and
they set aside free applications for
families that are in need
we are all so overwhelmed by the gesture
my brothers had a great time playing
ball hockey
it's been three years since the last
time my brother eric played hockey it
meant so much to all of us my mom said
it's been difficult accepting help from
others we feel guilty and think that
there's others more in need than us
we have now decided to accept the help
and one day hope that we can pay it
forward to someone else
in may my teacher mrs bate decided to
have a fun fair at our school and all
the proceeds would go to huntington's to
the huntington society
we were really shocked and very excited
the fun fair was an amazing success we
raised over thirty four hundred dollars
that day
our school is very small and only has
250 kids from jk to grade eight we were
very excited when wayne greenway from
the huntington society of canada came to
our school to receive the check
port stanley public school was the first
elementary school in canada to raise
money for hd
part of what helps our family get
through this difficult time is focusing
on helps helping raising money for hd my
brother eric is 12 collects canadian
tire money and my brother tyler who's
seven collects loose change from my
mom's purse
my mom's piggy bank
and my grandparents pockets
or wherever elsie can find it
all of us are trying hard to help in
whatever way we can
being at risk for hd is a constant worry
to my family and myself i sometimes find
it very hard to forget about hd i
struggle with wanting to know if i have
the gene some days and other days i just
want to forget the whole thing
i know what my i know my mom wants me to
carry on with my life and all my hopes
and dreams as if i never heard of hd
i know what she's trying to say but it's
very difficult to think about
not to think about i worry about myself
and my brothers and which one of us
could handle the news
i don't know how i'd react to find out
if i had the gene
i think i'd be okay with it but i
understand that it might get in the way
of me looking forward to my future
it's a very personal decision
even though i think i know i can make my
own decisions now i do understand what
my mom wants for me
it's a real struggle for me and that's
why i've really enjoyed speaking about
hd
the website created for young people was
a great idea
i would love to be able to talk to kids
my age going through the same
issues i'm dealing with
my friends a great i can talk to them
about anything but being able to talk to
someone that can totally relate that's a
different story
with a genetic disease like hd we all
see our parents going through the same
thing
we try to be optimistic and not to let
it get in the way of our plans
so we also get upset about this disease
when our parents struggle when our lives
change and we can no longer do what our
families used to do
but we're all in this together a club
like no other
with a lot of support from organizations
like the huntington society of canada
and other support workers help us get
through this
i hope all of you doctors
researchers support workers and
caregivers know how much we appreciate
your decision your dedication to this
disease our lives depend on your work
your long hours and time away from your
family must be difficult
but please don't ever doubt that it's
unappreciated we depend on you
families like ours struggle emotionally
physically mentally and financially with
this disease and we're counting on your
work
you are heroes and one day and when i
get down about hd in my future i'll try
and think of all of you working hard and
one day we can have a conference
confirming the cure for huntington's
i'd like to take this opportunity to
thank dr hayden for inviting me and the
huntington society of canada for getting
here the experience of speaking publicly
about hd helps me more than you know
thank you
well she talks at us some of you know
all of us being heroes for her this is a
hero for all of us
thank you