Kylee's 13th Birthday fundraiser for CDH Research

CHERUBS - THE ASSOCIATION OF CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH, AWARENESS AND SUPPORT

CHERUBS 2013 CDH Research Fund Drive


Kylee's 13th Birthday fundraiser for CDH Research

Going BIG this year. Happy 13th Birthday Kylee.  Our goal is to raise $1000.00 for CDH Research.  Bless your heart if you read the whole page.  We are long winded family.

Make that a double event fundraiser for me please.   I will be running two races in October.

 
1st race -   Ragnar Relay ( Oct. 4th – 5th ) I will be running from Cumberland, MD to Washington, D.C. You can learn more about the race here: http://www.ragnarrelay.com/race/dc 
 
 
I won a contest from Run Like a Mother http://anothermotherrunner.com/ and I will be running the Ragnar Relay with 23 other mother runners.  I will be on Team Dimity!!!! I can’t wait for this awesome mother runner healing adventure on two very special days - Kylee's days!
 
Freedom Green, whose family begged for a playdate for her and who holds the Ragnar dates start close to her heart. The mom-of-five lost a daughter, born on October 4, on October 5. “Those dates are meant to live life fully and not for me to feel sorry for myself,” she writes, “It’s a day to reflect on all the good we did on bringing her into the world & getting a chance to meet her.”
 
- Read more about my team at: http://anothermotherrunner.com/2013/06/09/meet-dimitys-ragnar-team/
 
 
2nd -  Oct. 12th Joe and I hit the streets of downtown Baltimore in the Baltimore Running Festival.  .  I will run the full marathon. My husband Joe will be running  the 1/2 marathon this year. Run daddy Run! http://www.thebaltimoremarathon.com/
 
NOTE:  Anyone is welcome to join our Team for the Oct. 12th race in Baltimore MD.  If you need more info Let me know.  We would love to see you there!  or you can make a sign and come on down to cheer us on, yell, cheer, give a high five or a smile and wave to keep our feet moving to the finish line.
 
Special Thanks:  To my amazing family for all of the love and support. To our kids Trey, Skyla, Chloe and Coach Curly who trained with me over the summer. Each child made and hit personal goals of their own on their bikes while keeping me or daddy going on our long HOT training runs over the summer. Who got up at the crack of dawn on Saturday's and Sunday's to ride along and be our dates. Trey's goal - 20 miles, Skyla's goal - 16 miles, Chloe's goal - 10 miles. Coach Curly - thank you for the mid week laughs! Now only if they could ride with us in the race as our personal water team. 
 
 
 Snapshot of our story:

On February 23, 2000 we found out we were pregnant with our first baby. On June 26th 2000 we had our 1st ultrasound. It's a girl!!!! Then we heard the words your daughter has Congenital Diaphragmatic Hernia for the 1st time EVER. It has forever changed our life. On Oct. 4, 2000 at 35 weeks & weighing 3lbs 15 oz Kylee was born via emergency C-section due to my high level of polyhydramnios building up and no further growth of Kylee’s lungs. ( Check out the photo of me to the left to see what Polyhydramnios can do to your body) My husband was told at one of our weekly check – ups take her to the hospital now! Neither one of us heard the doctor as we stood there waiting for our next appointment card. The doctor looked at my husband and said….you need to go to the hospital right now! We looked at each other and laughed. My husband scrambled to pick up the bags & take us to the car. Both of us were doing what we had been told to do…yet it felt like we were in a dream. Ok, it’s go time! What felt like a lifetime of research and meetings with doctors,surgeons, and hospitals on getting our plan all in place here we both stood far away from our home getting ready to face the unknown. All we could do was hope for the best.

It’s funny to think back to how we managed to get everything set up. I still think how in the world did we do it all? You will do anything to protect your child. It’s an emotion like no other. Now it was time for the incredible NICU team at Texas Children’s Hospital to take over. So for 14 hours team Kylee ( NICU staff, Doctor’s, Surgeons, family & friends) was up and running. The NICU team did everything they could but Kylee was to sick to make it to the next phase. Next came the words no parent ever wants to hear EVER. I remember it like it was yesterday. My husband and I in a quiet room with the doctor. I can hear everything he is saying yet I continue to ask him a million questions. Have you tired_______________?, Have you done___________________?, Can we try _______________? You have to give doctor's the upmost credit for having the hardest job in the world to deliver that news to parents. I know I could never do it. Everyone at the hospital was wonderful and will forever hold a special place in our hearts. Kylee was very sick and we ALL tried our best at giving her, her shot at life.


Why I run:

1) I run for CDH Research. You can NEVER ever have enough money for CDH research.

2) I run for my life. The life of my family.

3) To show our kids no matter what life tosses your way... You can & will get through it & become stronger and can make a difference.

4) To hopefully give other grieving CDH parents hope that life does & will go on after the loss of a child.

5) To kick the stigma that comes along with being a grieving parent to the curb. We are NOT a bomb. It's ok to talk to us. We are like everyone else with a little bit of a different life story. Not a disease.

6) To show cherubs families I mean business. Not only by volunteering daily. Once a year I run to raise funds for CDH Research, then the rest of the year I raise awareness by wearing my CDH race shirt in all my races.

 
 
 
 
 
Why: To raise money and awareness for the Congenital Diaphragmatic Hernia ( CDH ) Research fund at CHERUBS. Please join us in celebration. Kylee would have been 13 year’s old on Oct. 4, 2013. Kylee lost her battle with CDH on 10/05/00.
 
 
My volunteer Roles at CHERUBS:
 * On-Call for Grieving Families
* Facebook Admin
* CHERUBS Parent Advisory Board - ( CPAB )
 
 
 
 

What is Congenital Diaphragmatic Hernia?

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth.   CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive.  The cause is not known.  Over a half million babies have been born with CDH since 2000.  

CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.  1600 babies are born with CDH every year in the United States.  Globally, a baby is born with CDH every 10 minutes.

CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.

 

 

Please visit CHERUBS website to learn more about Congenital Diaphragmatic Hernia ( CDH ) at: http://www.cherubs-cdh.org/  and answer any questions you may have. 

 

CHERUBS is an IRS recognized public 501 (c) III non-profit organization founded in 1995.  IRS # 56-1916661

Founded in 1995, CHERUBS is an international charity, helping over 4300 families in 60 countries and leading the way in CDH Research, Awareness and Support services.

 

Here is the link to the CHERUBS Facebook page: https://www.facebook.com/#!/cdhsupport?fref=ts
 
 
Follow CHERUBS on Twitter: @cherubs
 
Follow us on Pinterest: http://pinterest.com/cdhawareness/cdh-awareness/
 
Thank you for visiting my fundraising page and making it all the way to the end.  


Many thanks in advance for your support -- and don't forget to forward this to anyone who you think might want to donate too! We need a lot of extra help to hit our $1000.00 goal this year. Last year we raised $840.00

If you make a donation, please e-mail me your home address at freedomktsc@verizon.net so we can mail you out a thank you card....after my family picks me up off of the ground.  

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$1,000
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$1,360
raised
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