The Alexander Family Fundraiser
Our Goal: $1500:RAISED $125
Jake and I were excited to be expecting our first child. We went in for our 20 week ultrasound to find out the sex of the baby. The tech called the doctor in to look at some of the images and gave us some news we were not expecting: a diagnosis we had never heard of before, congential diaphragmatic hernia. We were then referred on to a specialist in Evansville who confirmed the diagnosis. We were given the option of terminating the pregnancy, but quickly vetoed the thought of that. The specialist wanted us to go to Cincinnati to have some sort of in utero surgery done that had a very low success rate and puts mom and baby both at risk. Our OB doctor referred us up to Indianapolis and the surgeon there only gave us a 50% chance of survival. We were heart broken and scared and began to look for options. We searched and found Dr Kays in Florida. We quickly made a consultation appointment with him and flew down. He spent 3 hours with us and confirmed a left sided hernia with the stomach, spleen, and intestines in the chest. He gave our baby girl a 92% chance at survival. We knew in that moment that this was the place we needed to be. We came home and through many fundraisers and such through our church and community, we were able to temporarily move to Florida. Kennedy Grace endured 2 months in the NICU and we were finally able to bring her home.
WHY TINY HERO?
At the time of our diagnosis, such organizations as this did not exist yet. When we researched CDH, we only found two websites at the time, with one of those being for Dr Kays. We were lucky enough to be put in touch with two moms who shared their stories with us. I would have loved to have had an organization like this to answer questions and just talk to. Tiny Hero is about helping families find the best care, a supportive community, and a hope-filled future. So much fear comes with this diagnosis. Help us give families hope and 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.