Cockayne Syndrome - Real Mum story on MoM

9 Comments

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

9 Comments

- - mom81879 said
  - 18 Sep 2015
    10:08 pm
What a tragic disease to have to deal with, watching your daughter age before get time. You seem to have a coping mechanism in place. Try not to worry about the kids, they don’t understand. And the adults are being sympathetic, even though it’s unwanted. I wish you all the best xxx

- - mom94125 said
  - 20 Jun 2015
    1:34 pm
i hadn’t heard about this before. you are raising awareness just by doing this post.

- - mom70050 said
  - 17 Jun 2015
    9:29 am
Sorry that you are having to encounter such insensitive people. Can only hope that is not the case in the near future. Thank you for sharing your story and all the best to yourself and your family.

- - mom113055 said
  - 12 Apr 2015
    5:50 pm
great to read this story

- - mom57522 said
  - 07 Jan 2015
    11:42 am
How terribly sad. I’d never heard of this condition before. Unfortunately people can be so unkind.

- - pakeko said
  - 31 Oct 2014
    10:04 pm
As a mum with a angel herself my heart breaks for you. People can be so cruel and mean to those that are a bit different. Sending you massive hugs and no everyone is mean. Treasure each moment and try not to let others pull you down

- - omgjag31 said
  - 10 Sep 2013
    11:19 am
There are some nasty people Im this world. I feel for you and your beautiful girl you guys are going through enough you don’t need this from the outside world. I wish there was something I could do for you both

- - mel1 said
  - 03 Sep 2013
    10:08 am
Thanks for writing this, You\re right, as parents we have to teach our children to be accepting of everyone, its the same with racist attitudes. We need to teach and model the right behavoirs so the next generation can be better people that the last, in each generation. We need to develop as humans and be more humane towards each other. I wish you and your daughter a lovely life together.

- - cinta said
  - 03 Sep 2013
    6:54 am
People can be so horrible, you and your daughter can walk around with you’re heads high, and don’t worry about the mean people we all come across them