If you saw me walking down the street, you would notice that
I walk with a slight limp because I have hip displacement and you would also
notice that I have headphones on and singing along to my music on my iPod which
keeps me mosaic. You wouldn’t notice
that I have an intellectual disability and a chromosomal one as well.
You would see me texting my friends and family with my cellphone. I have a rare syndrome called Cri Du Chat
which means Cry of the Cat in French. I
am a mosaic which means some of my cells are affected by CDC but I can still
enjoy life to the fullest.
I came into the world on December 12th 1984. I was due on Christmas Day but my Mum decided
that I should come early because she was very sick with me. I was born by c-section at 11.32am. The doctors didn’t pick up my cat cry at
birth but someone else did, my Nana on my Mum’s side of the family. When I was born she didn’t like babies but
she knew that I was special. She used to
rub my back and that I was the only grandchild that she did that too. I wasn’t a good baby and used to keep up my
Mum and Dad all hours of the night. My Dad could hold me in one arm.
I have a younger brother and sister called David and
Rebecca. David is 18 months younger than
me and Rebecca (Bex) is 5 years younger than me. I have two stepsisters and two stepbrothers
called Hannah and Abby and John and William.
One of my biggest passions in life is books, I love to read and to write
as well. I think I have read over 1500
books and I am getting a kindle for my birthday in December. I love listening to music also and another
biggest passion of mine is my CDC family because I haven’t met anyone in New
Zealand with CDC yet and there is about 5 other families in New Zealand with
it. Currently I am making a collage of
pictures people who have CDC and so far I have 28 pictures for it and I have 16
more families on my list that I have connected through facebook.
I volunteer three mornings a week, one morning a week working in a
shop called Trade Aid. Trade Aid helps third
world countries by selling their products by using fair trade. We help over 28 countries all around the
world. We are a non profit organisation and some of the countries that we
help to sell their products are India, Kenya, Mexico, Nicaragua, Nepal just to
name a few. I can serve customers by operating
the til, dusting the shelves and sometimes the products too, I can process new
products coming in by putting the barcodes on the products. I also do my bosses banking for her by going
down to the bank and I am the only volunteer who is allowed to do this because
I wanted more responsibly. Last year in
November I overcome by not looking customers in the eye and only saying good
morning to them but one morning I asked three customers if they would like any
help. So now when people walk into the store I say good morning and ask them if
they would like any help.
The other two mornings I work at the YMCA doing a programme
called Boogie Buddies for two to five year olds it is so much fun and it is
good therapy for me. At Boogie Buddies I
set out a circle of mats on the floor when I arrive and then I help one of my
bosses set up the gym equipment for the circuit that the children do
upstairs. When the children arrive we
ask them to take off their shoes and socks and leave them neatly along the wall
and then we get them to sit down on the mats and then we do warm up exercise
with them and then we do a warm up song like the bird dance, here comes a bear,
the Hokey Pokey. After we have done the warm up song we tell
the kids to set on the benches to spilt them into two groups, one group stays
downstairs and the other goes upstairs to climb on the gym equipment and then downstairs
we set up a floor circuit with hula hoops, a throwing target with beanbags, a wobbly
bench with hula hoops one at each end and the children have to crawl through
them. Sometimes we do other activities
like at the end of the term we get out the parachute and put balls and feathers
on the parachute and we have to get them off and then we sit underneath the
parachute with all the kids and make it a tent.
Another activity we do with the kids is we have four buckets of coloured
balls around the floor and then when the music starts the kids have to put the
right balls in the right box and so for the balls we have green, yellow, red
and blue and us teachers go and put the wrong balls in the wrong boxes because
we trick them into thinking we don’t know our colours.
My hopes and dreams for the future are for to go get married
one day to the man of my dreams and that I love. Go to America and go to one of the CDC
conferences and to make a difference to the people who are living with Cri Du
Chat every single day.
For those people who are new and don’t know me know me I
wrote this quote that I want to share with you.
I am a
daughter, sister, person living with a disability, an aunt, a friend, a
granddaughter, a niece, a girlfriend, an inspiration, a role model, an adult, I
am a cook and a member of society, a cousin, and a light in this world, I am
all of these things and so much more. I
have CRI DU CHAT SYNDROME!!!!!!!!!!!
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