So, I've posted twice in two different groups trying to gather some votes for the non-profit I belong to. The group that gave me the info I needed when I was pregnant. The family that I've come to know better than my own family.
CHERUBS-The Association for Congenital Diaphragmatic Hernia Research, Awareness, and Support-is looking for votes via Facebook and Vivint Home Security to potentially win $250,000. The majority of this money would go towards research-research that is so critical. Our CDH babies fight for their lives before they're even able to cry. The hold strong before they can breathe on their own. They experience pain like no person should ever experience before they can even smile. However, there's no known cause for CDH. All doctors can say is "It just happens." They don't know why, they don't know how to stop it, and they're only 50% successful in fixing it. To win this money and be able to pay for some research, we could potentially find out WHY CDH happens. Which could lead to saving so many lives each year around the world, over 26,000 to be exact. That's right, to save over 26,000-that would mean that that's half of the babies that are born with CDH every year as doctors are only 50% successful in saving CDH babies' lives...so over 52,000 babies are born with CDH every year around the world.
Over 52,000 babies that have tubes put down their throat, IVs put in all over their bodies, oxygen monitors taped to their toes, and chest x-rays, echocardiograms, and blood gas tests conducted when they should be snuggled in a blanket in their mother's arms. However, that's never the case. I wasn't able to hold my baby until she was six weeks and two days old! If it had been just me and her in the room, I would've cried like a baby. But because I was putting up this facade of staying strong for her when I was with her, I held it together as best I could.
Six weeks and two days! I spent 39 and a half weeks making sure she had the right things to eat and drink, that she was getting all the right vitamins and the right doctor's care. Thirty-nine and a half weeks making sure that she was perfect on the outside when she arrived. But on the inside, she was dying and I couldn't do a DAMN thing about it except watch her. I watched her as she struggled to breathe with the ventilator, I watched her struggle stay alive while her "bad blood" was being pumped out of her, run through an oxygenation machine, then pumped back in only to have the cycle repeat itself. I sat and witnessed NUMEROUS blood transfusions, always taken aback by seeing her name on a cooler that was clearly marked for blood storage only. I watched her struggle to stay alive as her forehead started to become a slight shade of gray that worried me EVERY DAY. I struggled to stay come when doctors from Boston-who are world-renowned-tell me that if she doesn't get better in two weeks, I would have to say goodbye.
Do you know what that's like?! Do you know what true suffering is? If you have, won't you help us?! If you haven't, don't you want to prevent it from ever happening to you?! CDH can strike at anytime. It could happen to you, your sister, your daughter someday. As bad as that sounds, it's true...unless we can figure out how this happens and stop it!
All I'm asking for is 30 seconds or less of your time each day. It's so easy, I don't know why more people don't do it. Just visit www.voteforcdh.org and there will be steps to walk you through. It really is so easy! Please, help save our defenseless babies who come out fighting for a chance to live.
*The video I made for my daughter when she was about 8 months old..very accurately chronicles her fight.
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