The Jones Family Fundraiser
Our Goal: $500:raised $1150
"D-Day" came the week before Thanksgiving, and receiving the diagnosis literally felt like a bomb hit me. "This is about the toughest diagnosis a parent can receive," is about all I remember from that day. I asked, "What now?" The Dr. said that we would have to travel to one of the children's hospitals that treat CDH babies and find a doctor that we trusted. A short time later I found myself at one of those hospitals. While there, we discovered that part of our baby's liver was in his chest. This information changed everything. I was then given very scary survival statistics and an even scarier prediction of his quality of life. They also gave me a brochure on palliative care. After many thoughtful and tearful discussions, my husband and I were leaning toward palliative care for our baby. I started to mentally prepare myself to deliver a baby that I would never get to bring home. We also knew that he was ready for a name. Since we didn't know how much time we would have together, we wanted him to be a cemented family member immediately. I felt very alone during this time and decided to reach out to a CDH support group. Here's where our whole story changed. I was immediately contacted by a representative from Tiny Hero. She referred me to their website, which was full of pictures of beautiful, thriving children who had survived CDH. It was like a rope was dropped into the hole I was living in and I was being hoisted out. Harrison David Jones is now a CDH survivor too.
WHY TINY HERO?
Tiny Hero changed the course of our family's fate. When we were focusing on statistics and survival rates, they showed us the beautiful, vibrant faces of children that had beaten CDH. After being diagnosed with CDH, it's very easy to focus on the scary, unknown future ahead. Most doctors are unaware of the new medicine that's saving CDH babies. Tiny Hero is a resource for parents to see that their babies have the potential for a great life. All newly diagnosed parents should be exposed to this resource so that they know that hope exists. Tiny Hero also introduced us to Dr. Kays who, along with his amazing team, provided Harrison with the best care possible. He is the most diligent doctor I've ever met. He genuinely cares about Harrison and our family. His care has been a blessing.
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.