Friday, May 2, 2014

Cri du Chat Awareness Week

Next week, May 5 – May 9 is Cri du Chat awareness week. Cri du Chat syndrome, also known at 5p- syndrome occurs when a person is born missing part of the short arm of their fifth chromosome.

Olivia has 5p- syndrome. We didn’t get her diagnosis until she was two years and four months old. Even though we didn’t have a diagnosis for her, she started therapies when she was a year old to address global delays.

Most children with Cri du Chat have delays in both gross motor skills and fine motor skills. Sometimes, they have difficulty eating. They are usually small for their gestational age. Olivia weight 5lbs, 2oz. She was born nine days past her due date.

The name Cri du Chat comes from the cat cry that most babies with this syndrome have at birth. Olivia did have the cat cry but none of her doctors/nurses/therapists considered the possibility that she had 5p- syndrome. Olivia doesn’t have the typical features of a child with this syndrome.

But she does have low muscle tone, she did suffer from severe reflux as an infant. She was delayed in walking, talking, and her fine motor skills were delayed as well.

We’re asking that people spread the word on this rare syndrome. Supporter are asked to wear striped socked next week, one pulled up and the other down to represent the missing short arm of the fifth chromosome.

We want people to understand this syndrome, to see our children as we do. We think they’re amazing, beautiful, so incredibly strong.

I always say that Olivia does most of what we all do but with less DNA. That amazes me every single day. I feel incredibly lucky to be her mother, to watch her show the world how awesome she truly is.

1 comment:

AiringMyDirtyLaundry said...

I've actually not heard of this before you mentioned it.

A lot of the features sound like autism too. My son struggles with gross and fine motor skills. He's also small. Most kids his age are nearing 100 lbs. I think he's about 60.