Cockayne syndrome is a rare genetic illness, it’s an ageing disorder, there is CS Type 1 & CS Type 2. Type 1 children will pass away usually age 5, Type 2 has a life span of about 30 years old. My daughter has Type 2, she is a beautiful caring 14 year old girl, she was diagnosed when she was 7. She is very small, only 103cm. She has hearing loss, her vision is not good, speech problems, foot/walking problems, developmental delay, very sensitive to the sun, she has starting having issues with her liver as well lately. Many doctors have no idea about Cockayne Syndrome, I only know of 5 other people in Australia with CS.
I decided to write about this as I am dealing with alot at the moment, my daughters appearance has changed a lot in the last couple of years and we are getting a lot of kids laughing, pointing and making fun of my sweet girl. We also get a lot of pity looks from adults which I hate. Of course there are also nice kids who seem to understand about children with special needs.
I wish all parents would teach their children to show others respect even if they are different, it’s getting to the point where I don’t want to take my daughter anywhere anymore because it usually ends with me in tears and my children trying to make me feel better. Life is hard enough with out people making us feel so bad.
We are just trying to live our life like everybody else and I love my children so much. My daughter is a angel and I am trying to give her a wonderful life even if it is a short one.
Thanks for reading this.
Posted by m.foley, 2nd September 2013