Event: Joe & Freedom Green will be running our 1st full marathon in the Baltimore Running Festival on Oct. 13, 2012. In memory of our daughter Kylee Green.
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 12 year’s old on Oct. 4, 2012. Kylee lost her battle with CDH on 10/05/00.
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 specail place in my heart. Kylee was very sick and we ALL tried our best at giving her, her shot at life.
CHERUBS has played a large role in our life ever since we found out about CDH. It was the 1st web site we found after being told our daughter has Congenital Diaphragmatic Hernia.
CHERUBS was our main source of information, hope and support from members who had been down the CDH road before us. Without them it would have been so much harder to find the best plan for the birth of our daughter. We will forever be grateful to CHERUBS for the support before & after the birth of our daughter. For the opportunity it has given our family to have crossed paths with so many wonderful people. I have been a volunteer for over 10 years now and have watched CHERUBS grow. It’s sad to see it grow, but also amazing at the same time for each family that joins brings more support, comfort & strength, and knowledge to help others. When I think CHERUBS I think strength.
Please stop by and visit the CHERUBS web site to learn more. http://cherubs-cdh.org/
Can you all help us meet our crazy goal and make this the BEST birthday ever for our daughter Kylee!
My volunteer roles at CHERUBS: On-Call support team for grieving parents http://www.cherubs-cdh.org/volunteer/on-call.php , and parent Advisory Board http://www.cherubs-cdh.org/volunteer/cpab.php
Question most offten asked: Are you crazy? Yes, we are crazy passionte about helping the CDH community & families both old and new to arrive.
Comment most often received: “ I could never go through that” My response: Yes, you can. I’m living proof YOU CAN. Of course it’s been a bumpy ride, but our family has grown stronger and closer because of it.
Quotes that get me through my training:
“ If you run without any reason, you are just chasing the wind.” - Wesley Korir
“My universe will never be the same…I’m glad you came.” - The Wanted
CHERUBS is a 501(c)III non-profit organization. We help families of babies born with a severe birth defect, Congenital Diaphragmatic Hernia (CDH). CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. It affects 1:2500 births, but most people have not heard of it unless personally affected. 50% of babies born with CDH do not survive; the others endure long hospital stays and complicated surgeries. CDH has harmed over 600,000 babies since 2000 - taking the lives of over a quarter million children. The cause is unknown.
CHERUBS is working hard to raise awareness, promote research and support families. We have helped over 3600 families in 38 countries. All of our services are free. I am working very hard to make this event a success to help fund our services for the next year. Through kind-hearted donors like you, I know we can make this happen!