"Hug Your Babies," that's how Amy Price ends each one of her blogs. And it's so true. See, we should feel really lucky that we can hug our babies. Every night. Every morning. Every meal. Every smile. Every tear. I can hug my babies anytime I want to. And thanks to her story, (I hate saying the word "story" because this is no "story", it's real) I am. It's not that I didn't appreciate my children before I heard about the Price family. I really did. But their struggles have made me really stop and evaluate my life, my children, how I spend my time, and how I give my hugs.
Let me tell you a little bit about them, if you don't already know. Brad and Amy Price have 4 children. Two of which are in a fight for their lives. Her daughter, Liviana, was born with Congenital Diaphragmatic Hernia, CDH, which has a 50/50 survival rate. To say she beat the odds is an understatement. 50/50... do you realize that's like the flip of a coin whether or not your baby will survive? She did. What a strong girl. And then, a few months after she turned 2, her parents noticed her falling down a lot, losing her balance, and in December 2010 she was diagnosed with MLD (Metachromatic Leukodystrophy). This is a progressive, degenerative brain disease with no cure.
Her little brother, born on my own Tanner Nanner's Birthday, was born with the same disease. The same fatal, devastating disease. But unlike Liviana, it's not too late for Giovanni. He and his family are currently in Italy, undergoing an experimental treatment in hopes of saving his life. Because he was diagnosed before any symptoms set in, there's hope. So both parents were forced to quit their jobs and move their family to Italy, to hopefully save their son's life. Giovanni is in the hospital 24/7 for months. He can't leave or see his brothers and sisters. His mom or dad or babysitter have to be with him at all times, which means one person is always missing out on either being there for Giovanni, or missing out on the precious little time they have with Liviana. The situation has to be unbearable.
I can't imagine the pain this causes their family. Tanner had a brief, one night hospital stay and my heart was aching. That can't even compare to how this family must feel everyday. Seeing them poke the needle in his arm for his IV broke my heart. I can't imagine how it must feel to see all of the tubes, needles, and hair loss that poor little Giovanni has gone through in this short amount of time.
So, why am I posting about this? Many reasons. It's been on my mind night and day. Having 2 children the same age as theirs just makes it so real to me. What if Callie just stopped walking? What if Tanner had to go to Italy for treatment? Would our friends and family be there? (Yes, I know you would.) Could I count on the kindness of strangers to help us out? How do you even wrap your head around something like this?? I am also posting in hopes that you, my family and friends will donate. Even if it's $5 or $50, or whatever you can. Think of it as donating because THANK GOD Callie and Tanner are healthy, or your children are healthy. And if you were in this devastating situation, someone would be there for you.
As Amy always says, "Hug Your Babies" if they are 2 or 42, let them know how much you love them. Cherish all of the time you have with them. Realize that the "small stuff" we get caught up in every day just doesn't matter. It doesn't. What matters is that your children are surrounded with love, that you appreciate that they can walk, talk, and play and sing and dance. I've complained about my children getting sick, about ear infections, about allergies, but let me tell you, I'd obviously take a million ear infections compared to what these babies are facing.
Please take a little time to read Amy's blog. If you feel like donating, I'm leaving a link for that as well. If you have a business and would like to donate some items for an auction on 3/21 I will leave a link for that as well.
http://www.livianasjourney.blogspot.com/
http://livianasjourney.bbnow.org/donate.php
http://www.facebook.com/home.php#!/TheirJourney
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