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 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
By doing her dusting and banking every week
I keep on her toes by being me
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