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!!!!!!!!!!!