- By Melissa Carter. May 29, 2013.
Looking back, there were signs that my brother, Brian, and I were heading to a medical crisis. But no one thought of NBIA (Neurodegeneration with Brain Iron Accumulation) when we were kids. We wouldn’t know those words until much later.
I remember when we were growing up that Brian fell a lot. He also stuttered and went to speech therapy. As soon as he would stop the speech therapy, the stutter would come back.
- By Pam Stromsta. November, 2012.
Sept. 14 marked the fifth anniversary of our son's passing. Had he lived, Kenny would have been 26 on Oct. 31.
Patty Wood, president of NBIA Disorders Association, recently asked me if it seemed like only yesterday that Ken was here with us. I told her, yes, at times, but it also feels like forever since we held him, or heard his mischievous laugh or saw that gorgeous smile.
I remember finding Patty through the National Organization for Rare Disorders in the early 1990’s. There were only about 10 affected families then, but it meant everything to find another soul who understood what we were going through and was doing something about it.