In a few months, you will be asked to give money to the Muscular Dystrophy Association. The Labor Day Telethon is an annual event. MDA is an organization that helps thousands of families all over the nation. It is an organization that helps one of our families at KFVS12.
I still get asked all the time how my daughter is doing. I'm happy to say she's doing great. 17 months ago, after she was born, she wasn't doing great. Many of you sent cards and emails and we still really appreciate your thoughts and prayers. This week I'm going to share with you our story. I don't do it for attention or to get you to feel sorry for my family. I share it with you our story through my own home video. For the positive messages it comes with, and hopefully it will help you understand why the Muscular Dystrophy Association asks you for money every year.
If Melaina Grace Cunningham is awake, she is making noise, and it's a sound we love to hear. There have been a couple of times in her short 17-months that my wife and I thought we might lose the joy of this sound because not only is this the face of my little girl, it's also the face of Nemaline Rod Myopathy. A neuromuscular disease that twice almost took her life before her first birthday.
Like many MDA families, we had no idea the storm that was coming. Our pregnancy was normal. I bought a video camera because we were having a baby.
After Melaina was born, we got one final 24 hours of normal. The station sent Mike Shain to do a story. The grandparents arrived to see our little angel. Then, my world came crashing down.
We didn't get to take our baby home after birth. She was sent to the Neonatal Intensive Care Unit at Cardinal Glennon Hospital in St. Louis. The doctors said severe muscle weakness had caused her to get fluid in her lungs because her throat muscles didn't swallow effectively. The cause was a mystery at this point but what wasn't a mystery was the effect, pneumonia.
Our home away from home became the Ronald McDonald House. A place for families with sick kids. It's here that reality sets in. Nice groups of people prepare your meals every night. You have chores to complete every day. A real asset to families of sick children but this is not where you want to spend your first days of parenthood. Every day, we would make the short drive to the hospital. Arriving at 9 a.m. and leaving at 11 p.m. Melaina was hooked up to a variety of tubes and wires. Holding her was always a challenge. The monitor that shows your vital signs becomes your addiction. Your eyes become glued to it. Always wash thoroughly with iodine before entering the NICU. Once there, we found ways of passing the time and every sunset you spend here makes you wish for home even more.
I think it was hardest on my wife. I would eventually go back to work and commute on weekends. Andrea never left our baby's side. Her love makes me proud.
We had our meals in the hospital cafe. Not bad for hospital food. And every day we would travel the long hallway to the hospital chapel. Every day we would join many others asking for help. I asked GOD a lot of questions sitting in that chapel for which there are no easy answers.
Christmas that year was spent at the Ronald McDonald House...
But you aren't alone. There are pictures of the NICU graduates. Sucess stories. You wonder, will mine be added to this board?
In the NICU, a big white sheet represents prayers answered. Whenever a baby goes home, they put their footprint on the sheet. How we longed for that footprint.
The doctors are great, but have few answers. This is when you start hearing words like Spinal Muscular Atrophy, Myotonic Myopathy and Myastenia Gravis. Words that sound so scary and in some cases can mean a death sentence.
After almost two months, and still with no diagnosis, we got our footprint and we took Melaina home. I shot video the day we brought her home for the first time, still not knowing what the future would hold for our little girl and as we found out, the journey was only beginning.