My Week

My week has been eventful because I was curious about a Cri Du Chat video online and the comments that people were making I made the mistake of replying to one of the comments and what I got back well let’s say I am glad to have Cri Du Chat and try and change the minds of those people who say that we need to be shot at birth. If anyone wants to read that conversion just send me a private message or just comment on my blog.

My Mum is still away but comes home on Thursday morning.  I have been walking up the hill each day to go and feed the cats, last week I did lock my keys inside of her house.  My keys to her house not my keys to her house without realising it at the time so I walked down to my second Mum’s work who is also my Mum’s best friend work and she sorted out the rest and I got my keys back. 

My Dad is also away this week in Fiji with my stepmum which is pretty awesome because I am parentless until my Mum returns and when she does I am going to tell her that Dad and her need to go away more often together but not together because I am really enjoying not having parents around and there are other people that can help me.

I have started writing my speech for those people who don’t know me I like to be organised and I have written three paragraphs all ready and there is plenty more for me to write.

A lot of people know that Bryan is sick at the moment I heard from him on Friday morning and he told me through text that he is starting to feel better which is great that means I don’t have to worry about him that much anymore and we did mention Skype on last Saturday night.  For those people who don’t know Bryan has a rare syndrome like I do but his is one in a million.  His syndrome/disease is called Behçet's.

New CDC Families

I am a strong, confidant, beautiful woman who has reached out to a lot of wonderful, gorgeous and some amazing families. When I started reaching out to families I didn’t realise that there would be s many different families who have children and adults with CDC.  I remember having my first conversion with a Mum who lived in America on Facebook and she was quite amazed the things that I could do so the word quickly began to spread about me and what hope I could give to other families.  By that stage I was living in a house with three other girls and starting to do things on my own without my Mum’s help.  I started then writing my intro about myself to new families that I would send friend requests too.  These families didn’t judge me on the way that I lived my life.  They accepted me for the way that I am and what I have.  I am so honoured to speak at the Gold Coast conference next year and I am going to make everyone proud of me because this is my chance to tell my story about living with CDC.  Like Hannah said I have a very unique insight to what it is like living with CDC.  This is my perfected intro about me to new families for the moment until something changes and I will atomically update it. 

Hi my name is Rachel and I have Cri Du Chat but I am a mosaic which means some of my cells are affected but not all of them about 30%. I live in New Zealand and I live independently away from my parents in a house of my own and I have a boyfriend of four years called Bryan and I am 27.