In October of 2007 we headed off to the hospital for the arrival of our fourth child. The pregnancy did not seem different than the others so we were expecting to stay overnight and then bring her home the next day. Instead, after a long delivery and first day it became apparent that there was something wrong. She would attempt to eat, but only for a moment. She was getting weaker rather than stronger. She was eerily quiet. By the following morning she was on oxygen and an IV and was motionless.
We settled on her name as we waited for the ambulance to transfer us to a major hospital, Ayden (little fiery one) Jane (Gods gracious gift). Over the course of the next ten days Ayden Jane learned to eat and became strong enough to take home. We still had no diagnosis and were even told that the testing for Prader Willi Syndrome was negative.
Ayden Jane grew stronger, began to make a little noise and just went along with the rhythm of our family. At eight months, just when I was pretty sure she was going to grow out of whatever the problem was at birth, we went to a genetics follow up. Her growth curves had crossed and she had stopped growing in length. Our geneticist reviewed her records and tested Ayden Jane for PWS/UPD. A couple weeks later the call came. He was really excited to tell us that he had solved the mystery, Ayden Jane had PWS after all. We were not so excited.
We went in for an appointment to discuss the diagnosis and were told Growth Hormone was not to come until childhood and that Ayden Jane would be cognitively delayed with an IQ likely around 65. He painted a picture of behavior problems, autism, scoliosis, Hyperphasia and strabismus. However, he had told us to research…
I hit the Internet hard and for every bit of good information I had to wade through pages upon pages that were honestly just scary to read. In the end, we were blessed to connect with great people who put us on a path of hope and determination.
We attended our first FPWR conference in Washington DC and were convinced there was hope. Hearing about the research and meeting real families that were intact and happy despite PWS was incredible. I ran the Myrtle Beach Marathon to raise funds for FPWR. Well, in all honestly I ran as much for myself. It was a way to do something and as I settled in and realized that life with PWS was not going to be a short race, conquering a marathon somehow gave me confidence we could do this.
Now, at age 6, Ayden Jane has completed Kindergarten with flying colors. She plays rec soccer with her friends, rides a two-wheel bike and is on the swim team. She is one of the hardest working little kids I have ever met and approaches everything she attempts with an uncanny confidence that she will do well.
We continue to work with her to remove her current challenges of Prader Willi Syndrome in her daily life and look forward to the answers that research will provide to remove the challenges in her future. There is no doubt that Ayden Jane is a part of a generation of people with PWS that have a great hopes of a future with very few limits.