Saturday, 30 March 2013

CDC conference

I have reached out to more than 800 families on Facebook through my introduction about myself and I love what I do because I bring hope and faith to those families who are struggling to come to terms with CDC and what it means to them as a family.  I love it because I get to tell people who I am and I what I have achieved over the years.  About a month ago I went to a CDC conference in Australia and I loved it because I just could be myself and no one else even though it rained for the four days that we were there I loved it and I enjoyed it to be apart of something great.  Next time I want to take my boyfriend across so he can for himself how lucky he is to have a girlfriend like me.  I know that I haven’t written on my blog for such a long time, I think it is because I haven’t said anything to say until now. 

Most of the CDC community knows that I went to the conference and spoke in front of 150-200 people which is just scary in itself standing up there and reading my speech with a lot of distractions going on around me but I did it and I am so proud of myself and I know that I made a couple of people cry and a lot of them had tears in their eyes but I have worked out what I want to do with my life and that is to help families who have babies/children/teens/adults living with CDC as well as working at Trade Aid and the YMCA. 

If those people haven’t yet checked out my video yet it is on facebook in the CDC groups and couple of the other groups that I belong to.  I also wrote a poem for international Cri Du Chat week I know which is only about a month away but I am going to share it anyway and then going to reshape it again once it is international CDC week.
I have a rare syndrome called 5P- and here is a fact
Was discovered by a French man called Jerome Lejeune
Fifty years ago in 1963
I can do many things like a normal twenty eight year old

 I can live on my own and have a boyfriend
I can cook and try and keep my house clean
I can walk afar because I don’t own a car
I can have fun with my friends

Two mornings I work at the YMCA from 9 until 10.30am
Helping children have fun while being fit
There is a circuit with a lot of different actives like  
Climbing, sliding and balancing

 The other morning I work in a shop called Trade Aid
Where I try and help my boss all day
By doing her dusting and banking every week
I keep on her toes by being me

 I love to read and write
I could do it all night
I have a kindle which makes reading a whole lot fun
I can read a book in a day and a half

I reach out to other families through facebook
To show them what I can achieve and give them hope
In their darkest hour for someone to listen to them
Because they are not alone

Now it is time to celebrate
International Cri Du Chat week
So put on your t shirts and spread the word
That kids with Cri Du Chat simply amazing

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