We might view the world a little differently to most
people. We aren’t broken so we don’t
need to be fixed. We achieve things in
our time and in our own special way. We
might think differently to everyone else but in our parents eyes we are perfect
just the way we are. All CDC people
rock!!! Xox
If you wiped out people with disabilities there wouldn’t be
any colour in the world any more only black and white and we need to have
colour in the world in order to show each other love and compassion and understanding
for one another.
Most people see the outer beauty of someone not the inter
beauty that they hold. I see both inter
and outer beauty when I look at my CDC brothers and sisters.
My CDC brothers and sisters and I are superheroes in our
own right. We may not fight against
crime or super villains but we fight every single day to do simple tasks which
most people take for granted like walking, talking and expressing ourselves the
way in which we want to. To me my CDC
brothers and sisters are superheroes.
I know that I am rare and unique in my own way and today
we celebrate that by showing support by wearing Jeans for those people who have
rare syndromes and diseases. For a lot
of families who have children with CDC and other disabilities it is a chance to
show off their unique children to the world and for the world to see how
beautiful and precious their children are to everyone in their lives.
I love all my CDC brothers and sisters equally, I don’t have any favourite brothers or
sisters because to me they are special in their very unique way and it doesn’t
matter to me whether they can talk, walk or run because I love them all with my
heart.
I am a voice for those who can’t speak for
themselves. I am a beacon full of hope
and a promise to CDC families. I am
loyal, trustworthy, hardworking, respected in the CDC community and I am
beautiful inside and out. I am
everything that I have dreamed of becoming and so much more. I have touched so many people’s hearts and
lives. I am accepted as being me into a
wonderful family!!! Xox
I know what my purpose in life is and that is to teach
the world about Cri Du Chat and help and find parents who need that extra
support and guidance. Once they have me
in their lives I am not going anywhere and I am there for them and they aren’t
alone anymore. I love helping new families connect with families that they
might haven’t known that has existed before.
I am an inspiration to a lot of people. I write my quotes from my heart which is
filled with love, joy, honesty, loyal, truthfulness and a willing to help
others in time of their greatest need.
Once families with CDC children become friends with me, you are a friend
for life and I am your child’s voice for them, I will cheer on your child from
the sidelines, wish them a happy birthday on their birthday because everyone
needs a little bit of happiness on their birthday from their big CDC
sister. I will be there one step at a
time as you need me.
If you look past the Cri Du Chat label you would see
people with different abilities doing ordinary
things that our doctors said that we couldn’t achieve like walking,
talking, playing with our siblings and friends, laughing, living our lives to
the fullest of our abilities. We can achieve impossible things if we dream vast
and the world won’t see us being invisible but we will be visible for the world
to sit up and take notice of what is happening when we accomplish something
amazing and wonderful.
I am an angel in disguise who is missing 13.1 on my 5P
arm which is roughly about 80% in some of my cells. I don’t wear a halo or wings to spread my
message across I just need people to open up their hearts and love which makes
the world go round. I will fight for my
CDC brothers and sisters any day of the week, I am a voice that will be heard
and I will make a difference in their lives for them to have a better
tomorrow. I know my strengths and
weaknesses which makes me a well respected member of the Cri Du Chat community.
All children are exceptional but there are some children
who are very unique because they have rare genetic syndromes and they will
develop at their own pace with love and support, they can and will make a
difference in someone’s life and they will let their personalities shine
throughout the world.
Don’t take the small things in your life for granted because
there are people who have Cri Du Chat who achieve the small things every day in
their life. It maybe a small achievement
that you think is unimportant but to them it is enormous. They could have been working on their
milestone or achievement for years with the help of their families or their
therapists to achieve something that is worth celebrating.
I am grateful for my friends and family in my life and I
am also grateful for not having the full syndrome of Cri Du Chat and that I am
a mosaic so I can help spread the word about Cri Du Chat that we coexist within
our communities, cities, towns and countries all over the world. I am also grateful for my Cri Du Chat family
who support me to be me and having me as a positive influence in their
lives. I am also grateful for expressing
myself through words and beautiful quotes that I write.
I am one of the Cri Du Chat community greatest
heroes. A lot of people look up to me
because I am responsible, a leader, dependable and an inspirational woman. When I look at myself in a mirror I see a
hard working, intelligent, Kiwi girl who is committed to helping and working
alongside new families who are alone and afraid of the diagnose Cri Du Chat to
help them understand and to see their child’s potential through a tunnel of
light, hope and a lot of love.
I think I know why I was given the gift of being a mosaic
as my superpower because I can teach the world what it is like having Cri Du
Chat and help educate the public what Cri Du Chat is all about. My superpower comes from my heart because I
love helping new families understand what Cri Du Chat is all about. I love the tv show Charmed because they use
their powers for good and to help people like I do.
As most of you all know that I was diagnosed at 2 in a
half with having Cri Du Chat. When I
started reaching out to families about five years ago, I didn’t know what reaction I would get from
families who had children more severe than me because I could do things on my
own like reading, writing, riding my bike, cooking and speaking. I soon realised that I could help the Cri Du
Chat community with my knowledge and understanding what Cri Du Chat was all
about. Soon everyone knew who I was and
I still am reaching out to families who need my support and help. I won’t give up on my Cri Du Chat brothers
and sisters.
I am a volunteer, a role model, someone who people can
look up to and I bring light where there is darkness. I am not the R word nor are my CDC brothers
and sisters. We deserve to be treated
with RESPECT and understanding. Words
can be powerful and can hurt for a lifetime.
There are so many other cool words to use that people can choose
from. I don’t let my disability slow me
down or rule my life and CDC doesn’t define who I am as a person.
I have a unique insight to what it is like living with
CDC. I am an inspiration to a lot of
families but I am still someone despite my disability enjoys life and I have
interests just like everyone else in the world.
I would like to share some with you, I like helping families on facebook
to help them understand their child better.
I love playing scrabble with my Dad, love catching Pokemon on my
gameboy, enjoy texting my friends and family, listening to music on my iPod.
Love collecting elephants and also watching tv and reading books. These are some of the things that I love
doing because they are relaxing and peaceful to me.
Sometimes I feel guilty that I have a wonderful life and
there are some things that my CDC brothers and sisters can’t do and that I can
do. I know that touch so many wonderful
and shape so many lives but when I look
into my eyes of my CDC brothers and sisters I see how much joy they get from
the simple things in their lives. I am a
voice for them the ones who can’t speak for themselves and I give HOPE to those
families who need it. I may walk with a
limp because of my hip but my brain still works.
I have reached out and helped over 800 families through
facebook over the last four years. I
want to thank everyone who has believed in me.
Cri Du Chat has taught me so many things like when to let go of things
that I have no control over, Cri Du Chat has made me strong and made me fight
for my CDC brothers and sisters. Cri Du
Chat has also made me some excellent friends for life.