Home PageCri du chat syndrome

Cri du Chat Syndrome

 

cri du chat syndromeHere at Lifelong Literacy I’ve met many people of varying abilities over the years. I’ve worked with people from all over the Autism Spectrum, have laughed and joked with Down’s Syndrome kids and adults as well as people with a range of other conditions along the way.

Cri du Chat Syndrome, however, has a special place in my heart, which is why we have a whole page dedicated to it.

Chloe’s Story

In 2001, after a fairytale pregnancy and the easy birth of my first child, I was handed some news that would take me on a very unexpected path. My little girl had Cri du Chat Syndrome.

It meant that the short arm of chromosome 5 was damaged. Genetic testing showed that the damage was severe.

Nobody could really tell me what this meant in terms of her development, but never walking or talking was on the menu, as was a heart condition and immune system weaknesses.

Research brought me to several programmes of learning for her, including the What to do About Your Brain-Injured Child course by Glenn Doman. We were also very fortunate to work with Lidwina van Dyk, a human developmentalist who still works with us to help Chloe reach her potential.

Volunteers in the early years

We needed to do intensive physical and cognitive work with her, and soon an army of volunteers was recruited and set to work. This article describes it best:

cri du chat syndrome

The result:

Chloe can now walk, with assistance. She can shake and nod her head for yes or no and she can sign ‘more’. She makes her feelings and desires very clear, despite her lack of verbal language.

She can feed herself, though chewing is not her strength, and she would rather throw a cup than drink from it (she thinks she’s hilarious for doing this).

She has two younger sisters who love her dearly, even though she pulls their hair and messes up their bedrooms.

She has taught us so very much about how precious life is.

Some pictures of Chloe over the years…

 

Some useful links:

Cri du Chat Support Group of Australia

Cri du Chat Support UK

Cri du Chat Wiki

Leave a Reply