It’s so wonderful to think about how technology has brought everyone in our world closer together. My dream of getting out the word about this rare disease to more people is starting to happen. My blog started as an idea. When Andy was diagnosed with diabetes at 4 months old, I searched the internet everywhere I could to find out information about other babies with diabetes and every time I hit a roadblock. I remember reading one story about a baby who was put on a pump at just a couple of days old in some other country (I think somewhere in South America). That seemed to be the only information I could find at the time. After many months of turning up nothing and becoming frustrated, I gave up. Life started getting really busy for us because Andy was put on a pump and we ended up moving just a few months later. We were more concerned about what Andy’s blood sugar was and how much insulin he had been given for the day. Our lives revolved around diabetes, but we had no support. It was difficult to talk to other parents because many did not understand what we were going through.
When our doctor told us Andy may have a different kind of diabetes called Neonatal Diabetes, I immediately went back to the world wide web and started finding all kinds of articles about this very rare disease. But still, there was a nagging voice telling me I had to do something to get the word out. Many parents, like me, would not know the very medical term, Neonatal. Again our lives got busy when I started taking master’s degree courses, Dan did some contract work away from home for a year, we moved again and I became pregnant.
When I was pregnant with Katie, I was closely monitored by a genetic specialist. Many ultrasounds were done to keep a close watch on her growth and weight. Knowing that the gene Andy had can cause intrauterine growth restriction, I was checked every month and then every two weeks in my third trimester. When Katie’s weight started decreasing in percentile, I began to get worried that she was headed down the same road as Andy. The doctor tried to reassure me and told me she would not be worried unless she went below 10%. My mother’s instinct kicked into overdrive and I wanted answers so I started looking again on the internet. I knew the little girl that transitioned to glyburide in 2006 lived in Chicago so I started looking for articles and found out the names of the doctors. I also found out they were doing a study at the University of Chicago so I called and left messages so I could get involved.
Finally, I was getting somewhere. I was able to get involved in the study and meet many parents of other children like mine through the power of technology. I became part of an e-mail group and a group on FaceBook where we can share stories, ask questions, and give advice to each other. Now, I have started my blog to document our journey. One of the other mothers has plugged my blog on her own website and FaceBook page. I have met other parents of children who were diagnosed very young and they are getting involved in the study. I don’t know how much of an impact will be made, but if one family can experience freedom from insulin after hearing our story and getting tested, I feel it is all worthwhile.
NOTE: For anyone who has a child diagnosed with Type 1 diabetes under the age of 12 months, please visit neonataldiabetes.org for more information. Most of the children who test positive for the gene will be diagnosed under 6 months, but the doctors are involving others who were diagnosed a little older.