International Cri du Chat Awareness Week

“Mom? Are we dirty little freaks?”

That’s the question Olivia asked me yesterday on the way home from the dentist last night.

It startled me at first, wondering where she’d picked up such a phrase. Then I realized it’s from a song by P!nk. We listen to a lot of music and, evidently, some of it is questionable for little ears.

And like most five year olds, Olivia takes everything in. Everything.

See, that’s the thing, she’s so much like most other five year olds that I sometimes forget that she’s supposed to be ‘special.’

This week is the first annual International Cri du Chat Awareness week. We’re hoping to educate people on this syndrome, also known at 5p-.

In fact, I usually refer to the syndrome as 5p- instead of Cri du Chat because I feel like the Cri du Chat name just indicates one symptom of the syndrome, the cat cry, that Olivia had as an infant. That symptom no longer exists in my girl.

She’s a thriving, growing, laughing, dancing, singing five year old who sounds no more like a cat than most other 5 year olds out there.

Yes, she’s missing part of her fifth chromosome. That deletion has caused her to have low muscle tone, which means she didn’t walk as young as typical kids. She also took a little longer to speak. But she does talk now. She talks and talks and talks and talks.

My daughter is a bright and funny and sweet as any other five year old out there. She can be just as stubborn and frustrating too.

She loves, she laughs, she lives.

She brings happiness to so many who have had the honor of knowing her. She’s special, because she’s unique, not because of her chromosomes. Her big sister, who has 42 intact chromosomes is just as unique and special.

We’re just your typical family, navigating school nights and dentist appointments (no cavities for either of them, whoohoo!!) and play dates and tantrums, just like most other families out there.

Please, before you judge, check out www.fivepminus.org and learn more about this syndrome. It affects every individual differently, to varying degrees.

I know how lucky we are that Olivia is doing as well as she is. She doesn’t have any of the medical issues that sometimes affect people with 5p-. I started this blog almost two years ago after attending a dance marathon at Purdue University in West Lafayette, Indiana.

After I’d told our story of Olivia’s birth and the issues we’d faced and how hard I had to fight to finally get her diagnosis when she was over two years old, a woman approached me. She gazed longingly at Olivia. She said that she had a friend who’d received the diagnosis of 5p- prenatally. She said doctors told her friend that her child would never walk, she’d never talk, she’d live in a vegetative state from birth on, that was if she survived birth at all. Her friend had been urged to terminate her pregnancy by every doctor she’d consulted.

This woman watched my daughter, who was three at the time, her hair cropped short because she’d been pulling the left side out for over a year, and she fought tears. Olivia was running around that dance marathon like she owned it. She was charming every person she met. She was laughing and dancing and living.

That’s the important thing. Olivia was living. She has such a huge life and there is no doubt about the quality of that life.

It breaks my heart that doctors are basing life and death decisions on old, outdated information. 5p- syndrome is not a death sentence, it is not a sentence to life in a vegetative state or even in a wheel chair, which, honestly, doesn’t have to be all bad either. With today’s therapies, our kids are stronger, healthier than ever.

Research it, find parents who are raising kids with the syndrome, see how much better it is than the doctors might tell you. Yes, there is stress, and pain sometimes but there is so much more joy than sorrow.

I promise.

Updated: The beautiful Tiffany created this amazing picture. It says it all.