We’re excited to be hosting the 2nd Annual CDH 5k!
We’ve created this event in honor of our tiny hero, Khoy and every baby diagnosed with Congenital Diaphragmatic Hernia, a very rare but life threatening condition.
Congenital Diaphragmatic Hernia (CDH) is when a baby’s diaphragm doesn’t form completely. This leaves a hole, allowing organs to move into the chest. When those organs move into the chest, they crowd the heart and lungs causing pulmonary hypoplasia, breathing issues, and pulmonary hypertension . In Khoy’s case, (left sided cdh) his bowel, kidney and a bit of stomach bubble were in his abdomen. Increased volume loss in left lung and heart on the opposite side of the chest.
At 24 weeks we were sent to Fetal Medicine in STL and were given the diagnosis of Congenital Diaphragmatic Hernia. Terrified and never having heard of this condition before we were in disbelief. We were told there would be a 50%-70% survival rate possibly higher with STL Children’s being a leading treatment center. We were quickly discussing what our next steps were and what life would look like at birth and the months & years to come.
Khoy received his life saving surgery at just 5 days old and spent 43 days in the NICU.
Our first three weeks we were in the dreaded corner of the NICU for the most critical of patients. Four other babies right next door to us, all born that week and all born with CDH. (Unheard of!)
There we quickly heard of the Tiny Hero Charity Organization! Tiny Hero’s mission is to help families find the best care, supports families through financial grants & care packages, and offers a supportive community.
Tiny Hero is a registered nonprofit, and all funds raised will go directly to helping CDH families with anything they may need.
This organization is very important to us & we are thrilled to be able to host this 5k and give back to the CDH community.
Thank you for participating, donating, sharing, and helping raise awareness for these tough little babies!
Lots of love-
Eric, Emma, Kollyns & Khoy! 💙💛🩷
To donate:
https://runsignup.com/Race/IL/Pittsfield/StepsForStrongerLungs5K
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Also check out other Nonprofit events in Pittsfield, Sports events in Pittsfield.
