Sunday, August 24, 2014
So... in light of the awesome Ice Bucket Challenge for ALS, I've decided to start up a new challenge to shed some light on my daughter, Mallory's disorder and spread some awareness.
Mallory was born with a craniofacial disorder. Her rare disorder is characterized by premature fusion of certain bones of the skull and fusion of the hands and feet. When she was born she spent 77 days in the NICU/PICU. She had numerous procedures done and two surgeries. One was to place a gastrostomy tube and the other a tracheostomy. She had genetic testing done. The results led the geneticists to believe that she had Pfeiffer Syndrome. Only 1 in 100,000 babies are born with this. Talk about being an individual!
Since she was born we've done nothing but try to make her life as normal as our other kids. She's number six of my children. She has five big brothers. Yes. Five Big Brothers. And they all love her like crazy.
So what do I want? I want to spread some awareness folks. I didn't think my life would be turned upside down the way it has been... but it was. At 20 weeks along I was told I had a perfect, healthy baby girl on the way. I didn't find out until about 30 weeks that this wasn't quite the story. You can read all about it here: Mallory's Way.
We call Mallory our lady bug. Most all of our kids have had some kind of bug name. Jeremiah was 'Little Bug', Andrew was 'Drew Bug', Nicholas was 'Nick-a-bug' and Quentin was 'Buggy'. So it was only natural for Mallory to become our 'Lady Bug'.
We want to spread awareness of craniofacial disorders but we also want to spread the Choose Kind message. We should be teaching our children that different is awesome. We should be teaching our children to lend a hand to those who need it. We should be teaching our children about acceptance and love. Have your kids sign the Choose Kind pledge!
For this challenge this is what we are asking:
1: Donate or dedicate something lady bug related to Mallory. I can be a sticker, a temporary tattoo, a real lady bug, a drawing... etc. Take a video or photo of it and post it to Mallory's FB page (Mallory's Way) and hash tag #mallorysway.
2: Take the Children's Craniofacial Association's #choosekind challenge at CCA Kids Challenge. You can sign the Choose Kind petition and/or make a donation the Children's Craniofacial Association.
3. If you want to help Mallory directly, you can donate to her medical expenses at Love for Our Lady Bug.
I hope everyone can love this little lady enough to spread the word!! To tell her story and to help other little ones just like her!!