I know you know that Olivia has beautiful brown eyes, gorgeous and luxurious chocolate brown hair, freckles splayed across her cute button nose and a personality that never quits…but did you know Olivia has Cri du Chat Syndrome?
This week is International Cri du Chat Awareness week. Our goal during this week is to educate and inform about our children’s syndrome. We are small but mighty and trying to raise awareness of our syndrome.
Cri du Chat (kree-doo-shah) is also known as 5p- Syndrome. Olivia is missing part of her 5th chromosome…the p part! It just fell off during conception and here we are today! It’s called Cri du Chat because of the cry that most of the children have when they are born that sounds like a kitten. We were lucky to find out when Olivia was just 4 days old through a blood test. I say we were lucky because we were able to start her in early intervention right away. Some families don’t find out about their child’s diagnosis for a long time.
Olivia’s syndrome is rare; it is estimated that only 50-60 kids are born with Cri du Chat syndrome each year in the U.S. There is definitely a spectrum of effects and abilities. However, most of our children are nonverbal, have mental retardation, low muscle tone and similar facial features. You know what is really cool? They all LOVE the water and are very sweet and loving.
If you wouldn’t mind taking a few minutes to learn a little more about Olivia’s syndrome, visit here and watch our “I Can” video here. Olivia is sending you a thank you hug right now! You know what would be even better? Tell a friend about it too. Spread the awareness and the love.
Thank you for sharing Olivia’s story with us. Before I found your blog I never heard of Cri du Chat before- and I have worked with a lot of extraordinary children.
Thanks, Heather! She’s pretty rare! 😉 Have a great day!!Tiffanywww.elastamom.com
This is beautiful. You’ve inspired me to write my own Cri du Chat awareness post. I like the idea that we’re inspiring other parents who get this diagnosis for their kids to keep pushing, keep loving, keep hoping to prove all those doctors wrong.
Thanks, Tommie! I’ll be over to check it out. Have a great day!!Tiffanywww.elastamom.com
Thank you for sharing this. I don’t reach quite
as many people, but have been mentioning that Helena has Cri du Chat syndrome to as many people as I can this week. A lot people that see her everyday at the her brothers’ school don’t have a clue that she has a genetic disorder. I wanted people to get to know her before they labelled her, but I think by now I’m ready to spread the word.
It’s not always easy to spread the word, is it? Good luck! Have a great day!!Tiffanywww.elastamom.com