The Lenerz Family Fundraiser
Our Goal: $1500
It was December 12th, 2005, but it feels like it was yesterday. We headed for our 20 week ultrasound, as I laid on the table with my husband, mom, and sister in the room, I remember how excited my husband was when they said it was a boy. His face lit up the room. There was silence. The sonographer said she had to step out for a moment. A few moments later she came back with the doctor. He pointed to the monitor and said, “You see that. That’s his stomach, and it’s right next to his heart. It’s not good.” My heart sank and a lot of what he said all blurred together after that. He told us that our son had CDH and the outcome was not optimistic. He said our son would have a slim chance of survival and said that even if he did survive, he would have lifelong issues. He kept using the phrase “If you decide to continue the pregnancy,” and told us ending the pregnancy was a possibility. However, it wasn’t a decision I could make. The outlook was bleak. Many specialists told us our son would not have a good quality of life if he even survived. Then we discovered Dr. Kays - and he gave us hope. He said it wouldn't be an easy, but he would oversee the care of our baby and that their was hope of a life with our son. Leo entered the world on May 2, 2005. He spent 2 months in the NICU was on ECMO, but he came home, a healthy miracle. He is an active, smart, caring 13-year-old. Besides his scares from ECMO, his surgery and our annual visit with Dr. Kays, he lives a pretty normal life.
WHY TINY HERO?
I look at our almost 14 year old survivor and I can't help but think how blessed I am. Blessed I found a doctor who gave us hope, blessed I found an organization that offered support during this difficult time, blessed I had good insurance and a job that gave me time off without consequences, blessed that I get an entire life filled with Leo instead of a life of heartache without him. Not everyone is as blessed as I am. I think of those going through this difficult journey right now. Fighting for the life of their CDH baby. Not knowing day by day what will happen and feeling so alone. I remember that feeling all too well. But each of us can make a small difference in that. Every dollar goes directly to helping families like ours during a time when help is needed most.
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.