The Pape Family Fundraiser
Our Goal: $500:raised $440
Last year, after our anatomy scan confirmed we were having a baby boy, we heard the words no parent is ever prepared to hear. “Your baby has a congenital diaphragmatic hernia.” It was at that moment that C-D-H became more than just letters and we were told that our baby had a less than 30% chance of survival. Six weeks later, February 21, 2018 (a date that will forever haunt me), we were told that the numbers had gotten worse and there wasn’t anything that they could do to help our baby boy and that we would need to make plans to call hospice and make our baby comfortable when he was born. We refused. We pushed through some major hurdles, including considering going to CHOP to have a FETO procedure done. We went home from that devastating appointment and referenced the care package Tiny Hero had mailed us and immediately decided to travel to St. Petersburg, FL for a consultation at the Johns Hopkins All Children’s Hospital. After traveling to Florida for our initial consultation, we received a 90% survival rate from Dr. David Kays, when we were previously told less than 30% or worse. We returned home to West Virginia with the good news and quickly made plans and arrangements to travel back to Florida for the birth. We also were able to easily make a reservation for the nearby Ronald McDonald House for our stay. Tiny Hero gave us the information that we needed to make the decision to travel to Florida to not only give our baby boy the best odds of survival, but to thrive.
WHY TINY HERO?
Receiving this diagnosis was single-handedly the hardest day of our lives. But what we gained from it is worth every heart-breaking moment, every tear, every desperate prayer. We didn’t just get to bring our baby boy home with us, we brought home an entire new family, friends who we have bonded with in such a unique way, and blessings beyond all measure. If it weren’t for Tiny Hero, our entire story would have been different and we may not have our baby Aiden with us today. For that reason, we ask that you please consider donating to Tiny Hero for our Hope for the Holidays Fundraiser.
HOPE STARTS HERE HOODIE
You can also support our family by purchasing this exclusive Hope for the Holidays item. All proceeds from the sales go towards Tiny Hero. Tiny Hero is a 501(c)(3) organization built to help support families with CDH children.
What is CDH?
Congenital diaphragmatic hernia (CDH) occurs in an unborn baby when there is a hole in, or incomplete formation of, the diaphragm (the muscle under the lungs that is responsible for breathing).
CDH affects about one in every 2,500 babies (1600 cases in the U.S. each year), and occurs as often as cystic fibrosis and spina bifida, yet most have never heard of it. On average, only 50% of these babies survive. Learn more about what is CDH→
Where does my donation go?
Family Grants - We help families get to very best possible care and provide financial aid when needed.
Community Support - We create videos, update our blog and website, and produce printed materials to help expand our message of hope to a larger audience.
Inspiring Better Care - We partnered with the Fore Hadley Foundation to help fund productive research efforts across the country.