Do You Believe in Miracles?

About a week or so ago a friend on Facebook asked if anyone believes in miracles.  Without a doubt, I believe in them.

Eight years ago today I wasn't feeling quite like myself.  Since I would be turning 40 in 9 months, I just chalked it up to my age.  I thought for sure I was getting ready to head into that next "stage" of my life.  All morning long I kept having this nagging feeling that it wasn't my age, but that I could be pregnant.  Just the thought of that made my laugh.

You see, my husband and I had tried for years to become pregnant.  When it just wasn't happening, we decided to see a specialist.  Long story short, after a three year period of two different specialist,  six rounds of Clomid along with artificial insemination and failed IVF's, we were finally able to welcome a beautiful little girl into our lives.  We were so delighted we decided two years later to try again.  However, it just wasn't meant to be.  At eight weeks of pregnancy, I miscarried twins.  After many more tests, one of the top ten fertility specialists in the United States stated I was too old and would never be able to get pregnant again, much less maintain a pregnancy to term.  We were devastated.

We went on with our lives, but there was always a nagging feeling that our family wasn't complete.  We prayed continually for another child.  Maybe we needed to adopt, but the doors weren't opening for us in that direction.  I finally turned it over to God.  I remember saying that if it wasn't suppose to happen, it wouldn't, but that God knew the desires of my heart and that was to have another baby.

Fast forward to December of 2002.  We were asking our then 4 year old daughter what she wanted for Christmas.  She said a baby brother or sister.  We sat her down and tried to explain to the best of our ability that it probably wouldn't happen, especially with Christmas about a week away.  I'll never forget her child like faith saying "My teacher said if you want anything, you should pray for it.  So I'm praying for a baby."  And the subject wasn't mentioned again.

When lunch time rolled around that New Year's Eve of 2002, I decided to make a quick run to the grocery store and take a test.  Imagine my shock and surprise when that test was positive!  After nine years of infertility, the Lord had answered our prayers.  I'll never forget my husband's reaction that night when I handed him a gift bag stating I knew what I wanted to do for my 40th birthday while he pulled out a baby bottle.

This is where our CDH journey started.  Going through all of the ultrasounds, medical tests, surgeries, hospital stays, etc. did not sway me in the least on my belief in miracles.  I had already experienced one and I knew there could always be more.  And there were more, but we'll save those for later blogs. 

So when I am asked if I believe in miracles, I say a loud YES!  I have living proof that miracles still exist.  Do you believe?  I hope so.

Happy New Year everyone!












  

Year End Vote Blast

Today we are having another Vote Blast for the Vote for Kids Project.  It is one day, 100,000 votes for 10 great charities for children.  If you use Twitter, Facebook or MySpace, please tell everyone what cause you're voting for and why!  Post a comment such as the following:

 

My vote is for Taylor, born with CDH, who is your vote in honor of? Post the name of a child who is special to you in your status and pass this on!  http://pep.si/100kforkids

Vote for all 10 charities at once!   http://pep.si/100kforkids

I know that it can be difficult to repeatedly ask people to vote.  If we don't ask, how will it get done?  Who's going to speak up for these kids?  Can you imagine what can be done with this grant?  It could help 500 CDH families!  Wouldn't it have been great to be able to have that help when our children were first diagnosed?  What if it could help prevent any other family from hearing those words "Your child has a congenital diaphragmatic hernia".  

We really need to move up in rankings.  As of 3 days ago, we were in #21 and need to move up to #10.  That is going to take a lot of votes.

Please take the time to pass the word on this great cause.  

Have a great day!

It is Almost Christmas

Here we are, December 23rd.  I'm trying to be a good santa.  I've made my list and I'm checking it twice to make sure that nobody is forgotten.  Making sure that everyone who needs a gift has one. 

Yesterday was my son's last day of school until after the holiday break.  I had the present wrapped for his teacher, the cards for the secretaries and principal at the school.  Ten minutes before we were to leave, he decided he wanted to give a present to his school nurse.  That made a lot of sense.  He is in her office frequently.  She follows up with me whenever he visits her for bumps, cuts, etc.  I am very thankful that Bath and Body Works had great deals this year on their products.  I was able to pull out a bottle of Christmas anti-bacterial hand soap for her.  She said it was the perfect gift for a nurse who needs to wash her hands so frequently throughout the day.  My son's face lit up like he had given her the best present around.

Sometimes finding the perfect gift can just happen.  Other times it can be quite stressful.  Some times we just have to take a step back and realize that sometimes there is no perfect gift that can be bought in a store.  Maybe it is just taking time to sit with your child to read a book or to cuddle.  Maybe it is giving someone a telephone call or writing a quick note.  Maybe taking a meal over to someone who is going through a difficult time.  Maybe just being there to offer a shoulder for a grieving family.  Those little things can mean more than all of the store bought presents put together. 

Please take a few minutes to think about what is truly important.  Is it finding this year's newest toy that will be forgotten or broken in a few weeks?  Finding that perfect gift for someone?  Or is it the true meaning of Christmas?  Celebrating the best gift of all. 

Merry CHRISTmas, everybody.

Vote Blast

Today is a big vote blast for the 10 charities we are supporting through the Pepsi Refresh Project.  It is our one day to try to reach 100,000 votes for the kids.  Please take the time to vote.  I have included a link for you.
 http://pep.si/100kforkids

Winter Storm

Well, Minnesota, we are having another reminder of why our state is affectionately known as MinneSNOWta".  I've read that our area received anything from 17"-22" in about a 24 hour period.  I wonder how much we've received to date.  With this much snow already, it seems like it is going to be a long winter.  Did I say long winter?  Wait, winter doesn't start until December 21st.  It is still fall here.  Welcome to MinneSNOWta.

Now we are in the bone chilling subzero temperatures.  And we won't even get into the wind chill factor.  People outside our state just don't understand what it is like.   

Since diesel and cold temperatures don't go well together, I decided to take my son to school myself rather than letting him ride the bus. It only took a few seconds for him to cough a little bit from the cold taking his breath away.  I'm so glad that he is getting old enough to realize when that happens he needs to wear a scarf or breath into his jacket to warm the air a bit for him.  

Today the cold temperatures outside will keep me in the house baking cookies and cleaning while listening to Christmas music.  I feel so Becky Homecky having warm cookies just out of the oven when the kids walk through the door after school.  I'm also taking the time to vote for CHERUBS and the other projects for kids in the Pepsi Refresh Project.  In case you lost the link, here it is again.  

http://voteforkids.blogspot.com/
Take care and stay warm!

Minnesota Get Together

I was thinking it would be great to start off the new year by planning a get together for the Minnesota members of CHERUBS.  I'm thinking just a get together to be able to put names with faces.  Maybe we could go bowling, out to eat or just get together somewhere where the kids could play while the adults talk.  I'm open to suggestions.

I live in Farmington, which is by Lakeville and Apple Valley.  For those that don't know where that is, we are also the very bottom of what is considered the Twin City metro area.  I could find something around my area or move closer to Minneapolis.

If you have any ideas, please e-mail them to me at Minnesota@cherubs-cdh.org.  Hope to hear from you soon.

Thank you.

The Season of Giving

How many times have you heard the saying "'Tis the season of giving".  You've probably heard it more than once.  Have you ever taken the time about what it really means?

If you are like most people, you think that it is the time to give gifts.  Time to join the hustle and bustle in the stores to buy the "perfect" present for someone on your list.  Or maybe sitting in the comfort of your own home buying that present on-line. 

Did you ever think that you can give without spending money?  How about giving the gift of time?  Find a charity that is looking for volunteers, such as CHERUBS.  Maybe spend a little time volunteering at your child's school by reading with a child or helping a teacher with some projects.  You can always volunteer at the local food shelf or nursing home.  Maybe take a little time to donate blood at the local blood drive.  You may be thinking that during such a busy time of the year you don't have enough hours in the day to get your to do list done much less find time for something new.  Then why not take a few minutes to make that phone call you've been meaning to make.  Or write a quick note of encouragement to a friend.  Maybe just sitting and listening to someone who's going through a difficult time.  Take those few minutes to vote in the Pepsi Refresh Project.

Another way of giving is through random acts of kindness.  Hold the door open for someone.  Smile and say thank you to a cashier or waitress when you are out.  Maybe pay for the coffee for the person in the car behind you at the drive thru.  You never know who's life you could be touching.  Little acts can go a really long way.

I read that if you do something every day for 21 days, it will become automatically become a habit.  Why not give it a shot?  Do a little something extra each day for the next 21 days.  Then it won't just be the "season of giving", but the year of giving.  You'll be surprised at what a difference it can make.

Pepsi Refresh Project

CHERUBS is starting in the top 20 for the month of December in the Pepsi Refresh Project.  Please take time to vote every day in the project to help earn grants for babies born with CDH.  We have all experienced CDH either through the birth of our own child, a grandchild or even ourselves.  Let's do what we can to help these babies out.

http://www.refresheverything.com/

Don't forget that you can also text in your votes.

$250k CDH RESEARCH - text message 102542 send to 73774 (pepsi)
$50k Awareness - text 102365 to 73774
$25k Hospital Kits - text 101211 to 73774
$25k Financial Assistance - text 101202 to 73774
$25k Care Packages - text 102123 to 73774

Let's help those babies.

Happy Thanksgiving

Today is Thanksgiving.  A time for us to reflect on our lives and give thanks for all of our blessings. 

This year I am thankful for my family.  I have a loving husband and two great children.  I am thankful to have a roof over my head and food on my table.  I am thankful for my friends, the ones that have stuck by me through thick and thin, the ones that I have reconnected with, and the new ones that I have made.  I am thankful for a job that allows me to volunteer in various charities including CHERUBS.  I am thankful that my mom & my in-law's are able to join us for a long weekend.  I am thankful for a loving brother and sister that are there for me whenever I need a laugh, a hug or just someone to talk with.

I know there are times when it is very difficult to give thanks.  This year my brother-in-law passed away.  And this weekend is the fifth anniversary of my dad's passing.  But I am thankful for the time that we had together.  I am thankful for the memories that we created.  They may be gone, and the pain of losing them will always be there, but they will live on in our memories.  And to that I am thankful. 

I hope that each of you take a little time to reflect on your blessings and give thanks.

Happy Thanksgiving to all.

CDH Awareness

Today I wore my new CDH shirt for the very first time.  It is the one with the CDH in the middle of the wings.  I love the design.  I was hoping that someone would ask me about it so I could talk about CDH & CHERUBS a little bit.  Unfortunately, it didn't happen.  That won't stop me from wearing the shirt though.  My daughter said she would like one also, so maybe I'll buy one for her for Christmas.  Then maybe someone will ask her about it at school.  You can never be too young to start raising awareness.

All of this started to get me thinking about how else I could raise awareness.  I write about it on Facebook.  I post the Pepsi Refresh voting on Facebook too.  I talk about  CDH & CHERUBS when I'm volunteering at my son's school. My daughter wrote about it in a paper for school in the fifth grade.  My son is even thinking about using CDH as part of his science fair in the future.

Then I started to think about contacting the local paper.  I'm thinking about the little local paper that comes out once a week.  But what if they aren't interested in hearing just our story?  Would they believe the statistics I will give them?  Would they believe that if the population of Farmington MN (17,740 as of 2008) were all babies, slightly over 7 of them would have this birth defect?  Would they care?

I will be contacting them.  I also believe there is power in numbers.  If there is another CDH family interested in telling their story to the local paper, why not contact me?  Please send me an e-mail at minnesota@cherubs-cdh.org.  Maybe together we can get our story heard.

I can't sign off without putting a plug in for the Vote for Kids Project.  Please remember to vote every day.  Remember, there is power in numbers

http://voteforkids.blogspot.com/

Snow? Already?

At 5:30AM today, a Saturday, my CHERUB woke up complaining about a funny noise he heard on his window.  Dad told him to look outside because that funny noise was the snow that was starting to accumulate.  Well, to a 7 year old, it doesn't matter what time of the day it is, if there is snow he wants to be out in it.  He was very patient and waited until the rest of us were up, dressed and done with breakfast before heading outside to play.

Being able to send your child outside to play in the snow should be normal.  However, I've come to realize that letting my little guy play outside in certain weather can lead to respiratory issues.  It usually only lasts for a few days, but it happens just the same.  So do I not let him go out or just deal with the repercussions of his wanting to be like his big sister? 

Once again I am faced with the fact that my son is not like the majority of 7 year olds.  Yes, he likes cartoons, monster trucks, playing at the park, etc.  But he can't handle being out in the cold for long.  He wears a brace due to scoliosis which makes it difficult for him to maneuver.  He becomes easily winded when he runs. 

The best that I can do is to teach him to accept himself for who he is.  He is unable to play in sports, but he is doing a great job of learning to play the piano.  His smile is contagious.  He has an unbelievable sense of humor.  He is excelling academically.  So he may be a book worm instead of a jock, but that's just fine.  I thank God every day for this Blessing we've been given.

I can also do whatever is possible to raise awareness for CHERUBS and CDH.  I can vote in different contests the like Pepsi Refresh, hold fundraisers and buy t-shirts.  I can write letters and messages of Facebook.  All of this is not only to raise awareness, but to raise money to fund research so that other parents won't have to face what so many of us have already face with this birth defect.  Won't you join me?

More Ways to Help

I haven't posted much lately, and now I have two posts in one day.  Go figure.

Here are a few more ways that you can help raise awareness for CHERUBS:

How many times a day do you search something on your computer?  Did you know there is a way you can earn money for CHERUBS while doing a search?  Download the CHERUBS toolbar at GoodSearch.  Each time you do a search on your computer you will help raise money for CHERUBS.  And if you make any purchases through the GoodSearch Shop, a portion of your purchase will go to CHERUBS.  It is pretty easy to do and it only takes a few minutes of your time to download the toolbar.  Here is the link to download the toolbar:

http://www.goodsearch.com/toolbar/cherubs-the-association-of-congenital-diaphragmatic-hernia-research-advocacy-and-support

On November 25, 2010 there will be a CHERUBS E-bay auction.  I will post more information about this shortly.

Did you know that you can also purchase a CHERUBS ornament?  You can find more information about them 
at this link:    http://www.cdhawarenessshop.org/ornaments.php

I'll post more ideas as I come across them.  Once again, please feel free to mention any that you are aware of also.

What Can Be Done?

Anyone who knows me would agree that I have the "gift of gab".  I am known to be able to talk nonstop.  So, it is surprising to people that I have a hard time writing a blog.  What if I ramble?  Do I have anything worth sharing to people that I don't even know?  Then I think about how we are connected.  A horrible birth defect known as Congenital Diaphragmatic Hernia (CDH). And when I read about another baby lost to CDH, I think "how can I not write". 

I know you have probably all read and heard the statistics about CDH.  Most of you have gone through a CDH experience in your life with either your child, grandchild or yourself having CDH.   Right now I feel I need to state those facts again. One in every 2,500 births has CDH.  Only about 50% of those babies survive.  As I was told in the hospital at the birth of my son "The only thing CDH babies have in common is that they have nothing in common".  One baby born with very little lung tissue may survive while another born with a lot may not.

So, what can be done to help other babies and families from going through this?  We need to raise awareness.  We need to help raise funds for research as to why this happens and what can be done about it.  We need to help families that have received the devastating news about their unborn child.  We need to help families that are currently in the hospital.  You may be thinking, sounds great, Brenda, but I'm only one person.  What can I do to help?  Yes, you are one person, but together we can make a large and mighty group.

Right now the Pepsi Refresh voting is taking place.  By taking just a few minutes of your day to click on a few buttons, you can help CHERUBS and a few other children's charities in this contest.  Here's the link: 
http://voteforkids.blogspot.com.  You can make more people aware of this contest by posting the link on your Facebook page, your own personal blog (if you have one) or just e-mailing people in your address book.

Maybe you would like to volunteer.  CHERUBS has many great volunteer opportunities available.  Or maybe you have an idea that you would like to share.  Please let me know.  Together we can work to find a cure so no other families will have to hear the words "Your baby has a congenital diaphragmatic hernia".

A Few Ways to Support CHERUBS

First, let me apologize for not having any postings lately.  I wonder to myself if anybody is interested in reading my posts at all.  But when I think about CHERUBS and all of the babies out there, how can I not post.  I will try to update on a more frequent basis in the future.

We continue to be in the Pepsi Refresh contest, but the name has changed a bit.  It is now "Vote for Kids"
http://voteforkids.blogspot.com/ .   CHERUBS has teamed with other children's health and education projects and charities in the November voting.  Please remember to take the time to vote each day.  It only takes two minutes.

We've have now entered the month of November.  The leaves are off the trees.  The days are getting shorter.   The weather is getting chilly.  Time to be pulling out the long sleeve shirts and sweatshirts.  Maybe you would like to buy one at the CDH Awareness Shop.  http://www.cafepress.com/cherubs  There are shirts for kids and adults, including maternity shirts, along with ornaments, books, magnets...the list is endless.  Stop by and take a look.  Remember that Christmas is right around the corner.  Maybe you want to pick up a gift for someone.

 There are so many different ways to support CHERUBS.  I'll be writing about more in upcoming blogs.

Until then, have a great day.

Why CHERUBS?

In April 2003 our world was turned upside down when, at our 19 week ultrasound, our son was diagnosed with Congenital Diaphragmatic Hernia (CDH).  We were told the odds, that 50% of babies born with CDH do not survive.  Our doctor suggested terminating the pregnancy, but to us, that was not an option.

We had more doctor appointments and ultrasounds than a "regular" pregnancy.  We met with the Chief of Staff for the NICU at Children's Minneapolis to discuss the birth plan and take a tour of the NICU.  At that time he gave us information about CHERUBS and suggested we read the information they had posted.  We did just that.  We're not afraid to admit that we were scared at what we read.

In August 2003 our son was born with a left CDH.  He had a repair five days later.  It was determined that he was missing all but the rim of his left diaphragm.  All of his abdominal organs, including the liver, were in his chest.  We were told to prepare for the worst, but we only expected the best.  We believe that everything happens for a reason and there was a reason all of this was taking place.  We might not ever find out that reason, but we knew there was one.

Our son spent the first 161 days of his life at Children's Minneapolis.  He had a total of 11 surgeries while in the hospital.  He came home with a trach, vent dependent, an apnea monitor and a feeding tube.  We had to learn to live with a nurse in our house 16-24 hours a day.  Our six year old daughter said she didn't realize babies had so much equipment.

Just short of his second birthday, our son was decannulated (trach removed).  His feeding tube came out a year later.

At my son's six year check up, his pulmonologist and I talked about our journey with CDH.   The doctor had already used our son as an example in a presentation for a doctor's conference.  He also wanted to use him in a CDH/heart study he was doing with a cardiologist.  Then he asked me what I was doing with what I had learned.  We talked about CHERUBS.  That great resource we had heard about during our pregnancy.

I was already a fan of CHERUBS on Facebook.  So I checked it out a little more.  Dawn had made a posting that they were looking for volunteers.  Being a person who had a hard time saying no, I volunteered to raise awareness.  Shortly after that I volunteered to be the Minnesota state representative.

CHERUBS is a great resource.  Whatever you are looking for, the information is there.  And it is a great way to make friends.  I'll do what I can to support CHERUBS and make others aware of CDH.

Tastefully Simple Fundraiser

We are currently running a Tastefully Simple Fundraiser for CHERUBS through October 15th. 

Please take time to view the catalog at :   http://www.tastefullysimple.com/home.aspx

If you would like to place an order, please follow the online instructions.  You will need to use the following information:

Representative Name:  Stacy Stocker
ID #: 0025718
Name of Party:  CHERUBS (First name)  B. Johnson (Last Name)

If you are interested in having your own Tastefully Simple book party as a fundraiser for CHERUBS, please contact Stacy Stocker at simplystocker@yahoo.com.  She is happy to talk with anyone about a party through the end of 2010.  Since it is done online, anyone within the United States is able to be involved.

You may be asking how this could possibly be a fundraiser.  Our representative is graciously giving us 20% of her profits to CHERUBS.  The more we sell, the more we earn for CHERUBS.

This is a great fundraiser and a great time to be selling.  People enjoy food.  With the holiday season quickly approaching, it is a good time to buy party items or maybe even presents.

Press Release: Congenital Diaphragmatic Hernia Charity Recruits Voters to Win $375,000 to Help Critically Ill Babies And Their Families

Press Release:  Congenital Diaphragmatic Hernia Charity Recruits Voters to Win $375,000 to Help Critically Ill Babies And Their Families

Local Nonprofit Organization In National Pepsi Refresh Contest In The Running For $375,000 To Help Raise Awareness and Research Funds for Devastating Birth Defect

10-01-2010

Raleigh, NC - CHERUBS, a non-profit organization founded to help families of children born with Congenital Diaphragmatic Hernia (CDH) has climbed an uphill battle for 15 years to raise awareness and research fund and to continue to finance support services.  Now, they battle alongside other charities to fight for funding in the Pepsi Refresh contest.

On the first of each month, for 6 months, up to a dozen volunteers stayed awake until midnight when Pepsi Refresh opened the application process for new projects.  Feverishly clicking their computer keys to be one of the 1000 application accepted in the 2 minutes the system was open each month before the application limit was reached.  Finally, in July two applications made it through and they were in the August contest;  $25,000 to provide financial assistance for families hospital travel expenses and $25,000 to provide easy-to-understand information for hospitals.  For CHERUBS, the contest now began.

Coming off the all-summer long APX Gives Back contest, in which they they won 2nd place nationally for a prize of $30,000, CHERUBS members and voters were tired but diligently went back to work to try to win a Pepsi grant.   "Never did we expect to be in 2 huge contest back-to-back, nor have this incredible opportunity to try to win funds of this size.  But here we are and we are so excited for the chance to be able to fund so many greatly needed projects” said CHERUBS President, Dawn Williamson.

The contest grew even bigger for CHERUBS when 3 more projects made it into the September contest;  $250,000 for research funds, $50,000 for an awareness campaign and $25,000 for care packages for families.  With their previous 2 projects making the top 100 and rolling over to another month's voting, CHERUBS now has 5 projects in Pepsi Refresh.contest, an unheardof accomplishment.  "5 projects are a lot, but we didn't plan this and this is 5 opportunities, not 5 sure wins.  We have a lot of work to do to win even 1 of these project grants" says Williamson.  "These projects are laid out, every cent won has plans attached to it to help babies and families affected by Congenital Diaphragmatic Hernia.  All 5 of these projects could help 1000's. 30,000 babies are born with CDH every year and 15,000 of those babies don't survive.  There are 100's of thousands of CDH families who need help.  This is the largest grant possibility for these families that has been ever available.  We are excited about this opportunity to do so much good!"

CHERUBS members are excited too. The charity's web site shows photos of children holding up signs and asking for votes, while wearing wings and holding cans of Pepsi.  Facebook is littered with adorable profile photographs of more children asking for votes.  There are videos, bumper stickers, flyers, banners, signs in yards, school projects and 1000's of posts on-line to raise awareness and votes.  "The excitement is contagious.  Our members are so happy to be able to do something to help other CDH families.  CDH makes you feel so helpless, we don't often get opportunties like this to really make a difference by doing something as simple as voting.  And to be able to use our own children's photos and stories to raise awareness on such a huge level is thrilling for so many of us!" says Williamson.

CHERUBS not only raising awareness and voting for cash for their cause but an added bonus is networking with other causes. “We are so excited to be in this contest and to be in the company of so many other wonderful charities and projects! We have learned so much about other causes and became friends with many. No matter who wins this contest each month, we will all come out as winners. This has been a wonderful platform to raise awareness for all of our causes”.

Founded in 1995 by Mrs. Williamson and based here in the Triangle, CHERUBS is the world’s first and largest CDH organization with over 3400 members in 38 different countries and all 50 states. Dawn is the mother of Shane Torrence (1/28/93-9/11/99), born with left-sided CDH and multiple birth defects. Shane spent his first 10 months in the pediatric intensive care unit of Duke University and had many other hospitalizations and surgeries at the University of North Carolina at Chapel Hill.

“I miss my son every single day; CDH took him from me and robbed him of any type of normalcy during his short life,” said Williamson. “No mother’s arms should ever ache for a child she can no longer hold.”

Williamson made it her life’s mission to help other families affected by Congenital Diaphragmatic Hernia. If there is any doubt of faithfulness to this mission you need only to read the glowing reviews families around the world have posted all over the internet about how CHERUBS has helped them through their darkest days, see all the services listed on their web sites or count the over 12,000 fans they have on Facebook.

Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. It affects 1 in every 2500 babies, representing approximately 1600 babies in the United States each year, half of which do not survive. Some of the other half, like Williamson’s son, who only lived until the age of 6, end up suffering through life with lasting health problems such as feeding aversions, gastrointestinal problems, asthma, allergies, scoliosis, or long-term pulmonary problems.

In the U.S., there are annually more victims from CDH than tornados, hurricanes and lightening strikes combined. There are more children born each year with CDH than there are children born with Cystic Fibrosis or Spina Bifida, and although there is no known cure or typical treatment, there is still a significant lack of research and awareness in the public and medical communities about CDH. According to a Congressional Bill the charity is hoping to get passed for CDH Research, the estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000 while annual grants allocated by the National Institutes of Health for CDH at several research facilities is currently estimated at less than $5,000,000. Through this contest and other efforts, CHERUBS hopes to raise more awareness and funds for research and family support. “These babies are dying by the thousands and there is no known cause. The survival rate is only 50%. This just cannot be acceptable” says Williamson.

“This contest has not only allowed us to dramatically raise awareness about Congenital Diaphragmatic Hernia but it has offered us the opportunity to raise more money for our charity than we ever have before. $375,000 can do so many things for the CDH community and we are so grateful to Pepsi Refresh and to everyone who is voting for us.” For a small charity powered by volunteers, donations and fundraisers and run in a spare room of Williamson’s home to save funds, $375,000 could indeed go a long way. “We have over 3300 members and all of our services are free to CDH families. We run a very large web site with forums for families to gain information and support 24 hours a day, an annual international Congenital Diaphragmatic Hernia conference, the world’s largest CDH research database, we send care packages to new and expectant parents and so many, many other services on less than $35,000 a year. Our budget averages about $10 of assistance per family, which is ridiculous but we somehow pull it off. Winning this contest could do so much for our ability to help more CDH families!” says Williamson.

Families affected by CDH agree. “I vote because my sweet baby Mallory has opened our eyes to a terribled condition that we knew nothing about at the time. And from the statistics we have learned about CDH it saddens me that this illness is so unknown. CHERUBS has been my crutch from day one of diagnosis. I cannot imagine going through all of this without the support and information I have gotten from the organization and its members. Mallory was born on Jan. 4th of 2010, and still going strong in the hospital, and CHERUBS has been there for us every step of the way. God bless you all, and thank you from the bottom of my heart” says mom Sara Jimel Givent.

“I am voting in memory of our sweet Joshua who was born on March 26, 2010 and was with us 16 days. We love him and miss him terribly. If CHERUBS can win the $100,000, maybe another family won't have to go through this” wrote dad Jeff Campbell.

“Voting for my son Brandon who was diagnosed with CDH two days before his delivery in 2004. The only information we could find that even gave us hope was "CHERUBS". His outlook was not good but he is strong and healthy today because of UNC Children’s Hospital and Brandon’s drive to survive. Thanks CHERUBS for all the hard work and dedication that you provide for families struggling with this horrible birth defect. You gave us hope when we had none and during the long stay in the hospital. This continued even when we were dealing with many of the issues after we finally got him home” writes Fayetteville resident Cheryl Sandoval.

The fight to help these families is also obviously apparent in the members of CHERUBS. “When I was lost and all alone I turned to the internet hoping to find someone who cared...I found CHERUBS and a WHOLE BUNCH of FABULOUS someones who KNEW how I felt without me having to explain...CHERUBS has been my lifeline through our journey with CDH. There is always someone there with a comforting word when you need it, or someone who listen to you rant and vent when need be. It's a WONDERFUL group of people who I am proud to call my CDH family. I'm so sorry we've all met due to CDH, but if we all stick together, there's no telling what we can do to help rid the world of this terrible birth defect” says Canadian mom Shana Kelly.

CHERUBS welcomes the community’s support and votes in this contest. If you would like to help this organization you can vote through their web site at http://www.voteforcdh.org or through Facebook or text.

Proceeds from the contest will benefit CHERUBS Research, Awareness and Support Funds, and Williamson is hoping that the contest will bring out many supporters and media to help gain recognition for both CDH and the organization’s efforts.

CHERUBS will also gladly accept any donations to help further their work. Tax-deductible donations can be made on-line at http://www.cdhdonations.org or mailed to CHERUBS, 3650 Rogers Rd #290, Wake Forest, NC 27587.

To help raise more awareness and money for the organization, as well as funds to continue research and outreach, CHERUBS will be hosting a key fundraising event this fall. The CHERUBS 2010 Masquerading Angels Ball will be a formal event held on October 30th at the Durham Hilton near Duke with celebrity guests, a live band, casino and an auction. More information on this event is available at http://www.cherubsangelball.org

“There is still so much research that needs to be done. In 2010 this birth defect should not still exist, much less still have so many unanswered questions and so little research,” said Williamson. “CHERUBS wants to be able to help as many families as possible, because we understand the hurt and confusion that comes along with having a child with CDH. We want to spare other families from the devastating effects of CDH and we will keep fighting, keep researching and keep raising awareness until the cause and prevention of CDH is found.”


About CHERUBS

CHERUBS is a 501(c)3 organization located in North Carolina. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of June 2010, CHERUBS has over 3400 members in all 50 states and 38 countries. Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. CHERUBS is a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)3 Non-Profit Organization.

http://www.voteforcdh.org
http://www.cdhsupport.org
http://www.cherubsangelball.org


 

 

Welcome

Welcome to the blog for Virginia members of CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support


http://www.cdhsupport.org