The DeJonge Family Fundraiser
Our Goal: $1000:raised $1220
August 24, 2016 was the first time we’d ever heard of CDH. Our son, Drew, was diagnosed with left-side congenital diaphragmatic hernia. That day is still so emotional to think about. We didn’t fully understand the diagnosis before we were offered termination. We realized then that it must be very serious if that was the first option that was presented. Thankfully, the nurse at the office reached out to Johns Hopkins All Children’s Hospital and got us an appointment for the very next week. The CDH program coordinator, Joy Perkins, called me shortly after we left the appointment. She encouraged me and was able to explain CDH in more detail. I knew more about what to expect next and was so impressed with the amount of knowledge and experience she had. She told me about Tiny Hero. I’m really grateful for her guidance because I read each of the stories on the website over and over. They gave me hope that our son would survive. We learned as much as we could leading up to delivery, but nothing can fully prepare you for seeing your baby come out a deep shade of blue and need immediate support in order to survive. Through all of that we had an unusual calm knowing that our son was in the most capable and caring hands of an amazing team. He spent 8 days on ECMO, 19 days on a ventilator, and 55 days in the hospital. Drew is almost two and his smiles charm everyone he meets. We’re so blessed to have him here with us and to get the opportunity to watch him grow and thrive.
WHY TINY HERO?
We hope our friends and family will donate so that more families, just like ours, can have hope too. Tiny Hero assists in getting families to where they need to be to have their baby, as many hospitals are not equipped to care for a baby born with CDH. In our case, the community and hope we found by reading stories and connecting with other CDH families was so valuable. It made all the difference for us and we want the opportunity to improve the next family’s experience.
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.