Why I’m So Passionate

Posted on September 15, 2010

16



https://i0.wp.com/sphotos.ak.fbcdn.net/hphotos-ak-ash2/hs127.ash2/39673_1362508298581_1107806523_30837326_1247301_n.jpg

CLICK to vote via facebook by searching CHERUBS

CLICK to vote via the Pepsi Refresh site

VOTE 3 different ways to SAVE BABIES born with CDH

Text your vote to PEPSI (73774)

$250k research- txt msg 102542
$50k Awareness- txt msg 102365
$25k Hospital- txt msg 101211
$25k Financial Assistance-  txt msg 101202
$25k Care Packages-  txt msg 102123

FULL instructions on how to vote are listed at the end of this blog entry as well as information on what CDH is and other information!!

_______________________________________________________________

I felt I had to address this because lately I have been posting a lot about one particular subject… Congenital Diaphragmatic Hernia Research and Awareness

If this had been September of 2008, you wouldn’t have caught me posting this much about a birth defect that is hardly known but on July 8, 2009 my life was turned upside down and I learned what CDH was the hard way by having my son rushed to a hospital in an ambulance (read “My CDH story”).  People that know me, know that I’m really bad about following through on some things.  Yeah I start off at the starting gate full force but somewhere in the middle I kind of lose momentum and then it completely dies off.  I’m notorious for it.  It’s not because I don’t care, but because I have adult ADD.  I lose focus way too easily on some very important things.  It’s like I sit there and have my eye on the prize then… OH SHINY… and I’m off to something new.

There are days that I lose focus on CHERUBS (that is the name of the charity that helps children and their families that are suffering from CDH) but all I have to do is go to facebook and see all the wonderful men and women out there that have CDH survivors or who have lost their babies due to CDH, and they get me back on track.

Today I really want to push the last 16 days of the pepsi refresh contest for those babies out there that have earned their wings because of CDH.  I don’t want their (and their families) sacrifices to be in vain.  So if you would PLEASE read the rest of this post then help, I would appreciate it and so would hundreds of thousands of other families just like mine from all over the world.

______________________________________________________________________________
Now for the technical stuff so you can understand what CDH is:

https://i1.wp.com/sphotos.ak.fbcdn.net/hphotos-ak-snc4/hs181.snc4/37402_397725707005_37214172005_4292835_2030588_n.jpg

What is CDH?

Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year).  The cause of CDH is not yet known.  The diaphragm is formed in the first trimester of pregnancy and controls the lungs’ ability to inhale and exhale.  CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity.  This inhibits lung growth.

Every patient diagnosed with CDH is different.  Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available.  There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.

Roughly 50% of babies born with CDH do not survive.   Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems.  A few of the survivors suffer from severe long-term medical issues.

CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.

Every baby with CDH is different – like a snowflake, no two are alike.  What works for one baby, may not work for another.   There is no reliable indicator to predict if a baby will do well or not.   Babies with no diaphragm and little lung sometimes do well, while babies with 2 full lungs can sometimes do poorly.    Head to lung ratio is used to determine whether to intervene prenatally through in utero treatments but it does not indicate a true survival rate.  “Lung function” is also not an indicator as there are many other factors at work with these children such as kidney function, brain function, other birth defects, possible complications or infections while in the hospital, etc.

Parents can help their cherubs by becoming informed and educated about Congenital Diaphragmatic Hernia so that you can make the best decisions for your child.

https://i1.wp.com/sphotos.ak.fbcdn.net/hphotos-ak-ash2/hs160.ash2/41328_425674172892_727837892_5039377_6416184_n.jpg

Dawn, the president of CHERUBS

Chances are, you probably know someone or WILL know someone that has/will have a baby affected by CDH.  It really is that common.  So if it is that common, why do people NOT know about it and why isn’t there more research being done for it?  SIMPLE… there’s simply not enough money to fund these research projects, BUT there could be!

CHERUBS is a wonderful charity that helped me though the last year, understanding everything I needed to know about CDH and things to keep my eye on with my son (Thank you Dawn)!  Because of all the wonderful help and advice, I owe it to them to help them raise (or even win) the money that could mean MORE RESEARCH to these precious little ones!

__________________________________________________________________________

Now’s the part where I tell you how you can help and where I beg of you to pass this on and promise that I will do something special for you guys (just not sure what that special thing should be so give me ideas)

https://i0.wp.com/sphotos.ak.fbcdn.net/hphotos-ak-snc4/hs629.snc4/58896_423894337005_37214172005_4931472_3583450_n.jpg

We need more pictures like THIS!

CHERUBS is participating in the Pepsi Refresh Project for the month of September!  They have several projects to help families and also to gain funds for research for CDH!  There are only 16 days left in the month and they need your help.  There are 3 ways you can vote, so pick the one that is easiest for you!  You can find all these instructions on http://www.voteforcdh.org so please share this link with everyone you know!

  1. Text your vote to PEPSI (73774)
    now since there are several different projects (5 to be exact) you will need to text 5 different numbers to PEPSI, which are listed below.

    $250k research- text message 102542 send to 73774
    $50k Awareness- 102365 send to 73774
    $25k Hospital- text message 101211 send to 73774
    $25k Financial Assistance- 101202 send to 73774
    $25k Care Packages- 102123 send to 73774

  2. Vote on the Pepsi Refresh Facebook voting app
    Facebook App
    You may need to “like” the app first before you can vote but once you are there go to the SEARCH box and type in CHERUBS.  This should bring up a list of all the projects for the month of September.  Please click VOTE for all those that have a picture included (sharing with your friend and family is optional but will be greatly appreciated)
  3. Go to the following link and be taken directly to the PEPSI REFRESH SITE
    click HERE
    This link goes directly to the Pepsi Refresh site and already searches out all the projects for CDH.  It also includes some partner projects that are important to a lot of the CHERUBS members.  If you could vote for them also, that would be appreciated.  All of these projects are wonderful and will help many people and we stand behind them in the September Pepsi Refresh Project!

Thank you so much for reading this far and thank you in advance for being such wonderful people and helping CHERUBS in the Pepsi Refresh Project.  By winning these projects we can help thousands of people and THAT is why I’m so passionate about it!

https://i0.wp.com/sphotos.ak.fbcdn.net/hphotos-ak-ash2/hs105.ash2/38603_141213879235335_107334185956638_278347_5299390_n.jpg

HOW can you say NO to a face like that??

Advertisements
Posted in: Uncategorized