people in this room have a rare disease fact and according to the statistics
fact and according to the statistics
fact and according to the statistics many more of you have a friend colleague
many more of you have a friend colleague
many more of you have a friend colleague or family member affected rare disease
or family member affected rare disease
or family member affected rare disease is rare but with over 8,000 known rare
is rare but with over 8,000 known rare
is rare but with over 8,000 known rare diseases to have a rare disease is
diseases to have a rare disease is
diseases to have a rare disease is surprisingly common one in 17 of the UK
surprisingly common one in 17 of the UK
surprisingly common one in 17 of the UK population lives with the rare disease
population lives with the rare disease
population lives with the rare disease and my mission is simple is one of a
and my mission is simple is one of a
and my mission is simple is one of a rare revolution and I hope you will join
rare revolution and I hope you will join
rare revolution and I hope you will join me in 2012 my husband and I were in the
me in 2012 my husband and I were in the
me in 2012 my husband and I were in the blissful post-baby bubble after the
blissful post-baby bubble after the
blissful post-baby bubble after the birth of our first child and life was
birth of our first child and life was
birth of our first child and life was perfect but our world soon turned upside
perfect but our world soon turned upside
perfect but our world soon turned upside down when our son was diagnosed with
down when our son was diagnosed with
down when our son was diagnosed with xeroderma pigmentosum or XP for short
xeroderma pigmentosum or XP for short
xeroderma pigmentosum or XP for short age just 13 months sat in the
age just 13 months sat in the
age just 13 months sat in the consultants room we were told that our
consultants room we were told that our
consultants room we were told that our beautiful new baby boy had a DNA repair
beautiful new baby boy had a DNA repair
beautiful new baby boy had a DNA repair disorder which is an ultra rare
disorder which is an ultra rare
disorder which is an ultra rare condition affecting less than a hundred
condition affecting less than a hundred
condition affecting less than a hundred people in the UK it renders him unable
people in the UK it renders him unable
people in the UK it renders him unable to repair damage caused by ultraviolet
to repair damage caused by ultraviolet
to repair damage caused by ultraviolet light and at risk of neurological
light and at risk of neurological
light and at risk of neurological implications from eyesight and hearing
implications from eyesight and hearing
implications from eyesight and hearing loss to learning difficulties and
loss to learning difficulties and
loss to learning difficulties and impaired motor function on that day
impaired motor function on that day
impaired motor function on that day February the 14th not our most romantic
February the 14th not our most romantic
February the 14th not our most romantic Valentine’s Day today we were told he
Valentine’s Day today we were told he
Valentine’s Day today we were told he would spend his entire life completely
would spend his entire life completely
would spend his entire life completely shielded from and protected from
shielded from and protected from
shielded from and protected from ultraviolet light and all light on that
ultraviolet light and all light on that
ultraviolet light and all light on that spectrum if like me at the time you
spectrum if like me at the time you
spectrum if like me at the time you don’t know what that means it means all
don’t know what that means it means all
don’t know what that means it means all day light and most types of light bulbs
without complete protection essence skin
without complete protection essence skin was severely burned and he will develop
was severely burned and he will develop
was severely burned and he will develop life lighting scared skin cancers he is
life lighting scared skin cancers he is
life lighting scared skin cancers he is 10,000 times more susceptible to skin
10,000 times more susceptible to skin
10,000 times more susceptible to skin cancer than you and I so it was the
cancer than you and I so it was the
cancer than you and I so it was the prognosis of a life of darkness as I let
prognosis of a life of darkness as I let
prognosis of a life of darkness as I let those facts settle in I did what most
those facts settle in I did what most
those facts settle in I did what most people do in that situation and I
people do in that situation and I
people do in that situation and I reached for dr. Google the search
reached for dr. Google the search
reached for dr. Google the search results were bleak they were images to
results were bleak they were images to
results were bleak they were images to fear the heart that left us reeling
fear the heart that left us reeling
fear the heart that left us reeling about what the future might hold for
about what the future might hold for
about what the future might hold for Ariston at that point I pulled myself
Ariston at that point I pulled myself
Ariston at that point I pulled myself together gave myself a pep talk I made
together gave myself a pep talk I made
together gave myself a pep talk I made three important pledges pledge one that
three important pledges pledge one that
three important pledges pledge one that my son would not live in the shadows and
my son would not live in the shadows and
my son would not live in the shadows and would indeed dance in the sunlight and
would indeed dance in the sunlight and
would indeed dance in the sunlight and live as full
live as full
live as full life as possible pledge to that next
life as possible pledge to that next
life as possible pledge to that next time a family reached for dr. Google
time a family reached for dr. Google
time a family reached for dr. Google instead of this they would find images
instead of this they would find images
instead of this they would find images of light inspiration and true
of light inspiration and true
of light inspiration and true possibility and place three that my son
possibility and place three that my son
possibility and place three that my son and others like him would be accepted in
and others like him would be accepted in
and others like him would be accepted in society for the incredible individuals
society for the incredible individuals
society for the incredible individuals they are and not defined by their
they are and not defined by their
they are and not defined by their condition pledge one is a very personal
condition pledge one is a very personal
condition pledge one is a very personal one to my family my husband and I do and
one to my family my husband and I do and
one to my family my husband and I do and will continue to dedicate our lives to
will continue to dedicate our lives to
will continue to dedicate our lives to engineering the Edison lives in complete
engineering the Edison lives in complete
engineering the Edison lives in complete protection from ultraviolet light we
protection from ultraviolet light we
protection from ultraviolet light we balance daytime and nocturnal living to
balance daytime and nocturnal living to
balance daytime and nocturnal living to ensure that both of our sons live as
ensure that both of our sons live as
ensure that both of our sons live as free as possible life with maximum
free as possible life with maximum
free as possible life with maximum opportunity and thrive pledge to is also
opportunity and thrive pledge to is also
opportunity and thrive pledge to is also somewhat of a family affair
somewhat of a family affair
somewhat of a family affair for five years side by side with my
for five years side by side with my
for five years side by side with my sister Rebecca Stuart we have created
sister Rebecca Stuart we have created
sister Rebecca Stuart we have created and built a charity with global reach a
and built a charity with global reach a
and built a charity with global reach a Teddington trust we support educate and
Teddington trust we support educate and
Teddington trust we support educate and protect families affected by XP and we
protect families affected by XP and we
protect families affected by XP and we work hard to get our message of hope and
work hard to get our message of hope and
work hard to get our message of hope and possibility out there slowly pushing the
possibility out there slowly pushing the
possibility out there slowly pushing the outdated content of dr. Google down the
outdated content of dr. Google down the
outdated content of dr. Google down the search engine pledge 3 i must admit as a
search engine pledge 3 i must admit as a
search engine pledge 3 i must admit as a more difficult nut to crack
more difficult nut to crack
more difficult nut to crack because i do not have control over
because i do not have control over
because i do not have control over society how society in the world
society how society in the world
society how society in the world responds to my son and others like him
responds to my son and others like him
responds to my son and others like him with rare diseases outside of my control
with rare diseases outside of my control
with rare diseases outside of my control or is it until 5 minutes ago you and I
or is it until 5 minutes ago you and I
or is it until 5 minutes ago you and I were complete strangers and if I were to
were complete strangers and if I were to
were complete strangers and if I were to ask you how much you earned you’d
ask you how much you earned you’d
ask you how much you earned you’d probably think me quite brash if I were
probably think me quite brash if I were
probably think me quite brash if I were to ask you who you voted for in the last
to ask you who you voted for in the last
to ask you who you voted for in the last election you’d probably think me rude
election you’d probably think me rude
election you’d probably think me rude and if I were to ask your sexual
and if I were to ask your sexual
and if I were to ask your sexual preference and desires I’m pretty sure
preference and desires I’m pretty sure
preference and desires I’m pretty sure that you would be stunned and yet on a
that you would be stunned and yet on a
that you would be stunned and yet on a near daily basis while going about our
near daily basis while going about our
near daily basis while going about our daily lives buying a loaf of bread
daily lives buying a loaf of bread
daily lives buying a loaf of bread trying on school shoes or just going to
trying on school shoes or just going to
trying on school shoes or just going to the park people routinely stop me in
the park people routinely stop me in
the park people routinely stop me in front of my son and ask what’s wrong
front of my son and ask what’s wrong
front of my son and ask what’s wrong with him
with him
with him is that a cure will he grow out of it
is that a cure will he grow out of it
is that a cure will he grow out of it and the biggie will he die it seems that
and the biggie will he die it seems that
and the biggie will he die it seems that the curiosity of rare disease deletes
the curiosity of rare disease deletes
the curiosity of rare disease deletes the natural filter of what is
the natural filter of what is
the natural filter of what is appropriate in front of a child or
appropriate in front of a child or
appropriate in front of a child or otherwise in society there are the
otherwise in society there are the
otherwise in society there are the stator
stator
stator that I just can’t take my eyes off in
that I just can’t take my eyes off in
that I just can’t take my eyes off in people the lovers who find it funny and
people the lovers who find it funny and
people the lovers who find it funny and the comedians who find themselves funny
the comedians who find themselves funny
the comedians who find themselves funny and somehow imagine that they are the
and somehow imagine that they are the
and somehow imagine that they are the first to ask him are you a beekeeper a
first to ask him are you a beekeeper a
first to ask him are you a beekeeper a spaceman are you contagious or who’ve
spaceman are you contagious or who’ve
spaceman are you contagious or who’ve you come as we’ve heard it all
you come as we’ve heard it all
you come as we’ve heard it all and I honestly do believe that although
and I honestly do believe that although
and I honestly do believe that although it’s very hurtful at the time most of it
it’s very hurtful at the time most of it
it’s very hurtful at the time most of it is not meant to be unkind it’s lack of
is not meant to be unkind it’s lack of
is not meant to be unkind it’s lack of understanding it’s ignorance and
understanding it’s ignorance and
understanding it’s ignorance and sometimes it’s a bit of fear and
sometimes it’s a bit of fear and
sometimes it’s a bit of fear and confusion what is needed as education
confusion what is needed as education
confusion what is needed as education widespread education across every single
widespread education across every single
widespread education across every single walk of life education starting at
walk of life education starting at
walk of life education starting at schools for children to understand to
schools for children to understand to
schools for children to understand to accept embrace difference absolutely
accept embrace difference absolutely
accept embrace difference absolutely without exception educators of Education
without exception educators of Education
without exception educators of Education of educators to build inclusive and
of educators to build inclusive and
of educators to build inclusive and nurturing schools so that everybody can
nurturing schools so that everybody can
nurturing schools so that everybody can thrive and have equal opportunity and
thrive and have equal opportunity and
thrive and have equal opportunity and have mutual respect at v– education of
have mutual respect at v– education of
have mutual respect at v– education of society for us to see individuals for
society for us to see individuals for
society for us to see individuals for just that individuals are not to judge
just that individuals are not to judge
just that individuals are not to judge and define them by their medical status
and define them by their medical status
and define them by their medical status or condition and even education of rare
or condition and even education of rare
or condition and even education of rare disease patients themselves to hold
disease patients themselves to hold
disease patients themselves to hold their heads up high and go fearlessly
their heads up high and go fearlessly
their heads up high and go fearlessly into life with an open heart and utter
into life with an open heart and utter
into life with an open heart and utter confidence of the value they bring to
confidence of the value they bring to
confidence of the value they bring to our life is indeed time for a revolution
our life is indeed time for a revolution
our life is indeed time for a revolution and it is one of rare education
and it is one of rare education
and it is one of rare education it’s headington trust we provide free
it’s headington trust we provide free
it’s headington trust we provide free educational resources to families and
educational resources to families and
educational resources to families and children affected with XP around the
children affected with XP around the
children affected with XP around the globe we do this so that we can teach
globe we do this so that we can teach
globe we do this so that we can teach them and educate them about the complex
them and educate them about the complex
them and educate them about the complex nature of their condition and protection
nature of their condition and protection
nature of their condition and protection and to inspire them that everything
and to inspire them that everything
and to inspire them that everything really is possible if they plan and
really is possible if they plan and
really is possible if they plan and prepare we are working hard to get our
prepare we are working hard to get our
prepare we are working hard to get our little Ted goes to school and not
little Ted goes to school and not
little Ted goes to school and not educational resource nationally across
educational resource nationally across
educational resource nationally across schools in the UK teaching of acceptance
schools in the UK teaching of acceptance
schools in the UK teaching of acceptance inclusion and rare disease through our
inclusion and rare disease through our
inclusion and rare disease through our hashtag bears for air campaign and just
hashtag bears for air campaign and just
hashtag bears for air campaign and just last September we launched a brand new
last September we launched a brand new
last September we launched a brand new digital rare disease magazine a free
digital rare disease magazine a free
digital rare disease magazine a free resource with a rare disease community
resource with a rare disease community
resource with a rare disease community giving a voice to the 300
giving a voice to the 300
giving a voice to the 300 and 50 million people globally living
and 50 million people globally living
and 50 million people globally living with a rare disease and it is no
with a rare disease and it is no
with a rare disease and it is no coincidence that our launch issue
coincidence that our launch issue
coincidence that our launch issue focused on the topic of rare education
focused on the topic of rare education
focused on the topic of rare education later this year we will launch a special
later this year we will launch a special
later this year we will launch a special rare revolution magazine version for
rare revolution magazine version for
rare revolution magazine version for kids giving rare children a place to be
kids giving rare children a place to be
kids giving rare children a place to be heard and seen we want to see the
heard and seen we want to see the
heard and seen we want to see the conversation of rare disease starting in
conversation of rare disease starting in
conversation of rare disease starting in school and permeating through society so
school and permeating through society so
school and permeating through society so that in time and with a turn of tide it
that in time and with a turn of tide it
that in time and with a turn of tide it can become a composite part of Education
can become a composite part of Education
can become a composite part of Education for the future creating better
for the future creating better
for the future creating better understanding and more empathetic
understanding and more empathetic
understanding and more empathetic societies for generations to come while
societies for generations to come while
societies for generations to come while we may have created some of the tools
we may have created some of the tools
we may have created some of the tools and the resources you too can play a key
and the resources you too can play a key
and the resources you too can play a key part and every one of you here today has
part and every one of you here today has
part and every one of you here today has the possibility of helping us turn the
the possibility of helping us turn the
the possibility of helping us turn the tide and become a rare champion by
tide and become a rare champion by
tide and become a rare champion by taking responsibility and starting the
taking responsibility and starting the
taking responsibility and starting the conversation of rare disease in your own
conversation of rare disease in your own
conversation of rare disease in your own homes and your own families with all of
homes and your own families with all of
homes and your own families with all of this movement you can help me achieve my
this movement you can help me achieve my
this movement you can help me achieve my third pledge to give acceptance for my
third pledge to give acceptance for my
third pledge to give acceptance for my side and others like him living with
side and others like him living with
side and others like him living with rare disease helped me turn the tide and
rare disease helped me turn the tide and
rare disease helped me turn the tide and please join my rare education revolution
please join my rare education revolution
please join my rare education revolution [Applause]
”
Be First to Comment