The Road Less Traveled

The life of living with a someone who has a disease, but no true diagnosis can make or break a family. Our journey began years ago when our 17 year old son was born. Over the years we would get many diagnosis', but most never stuck. It is extremely demoralizing to think you have answer only to be told that the symptoms don't match the disease. When the experts don't know what to do and start avoiding your phone calls and emails, that is when it feels like there is no hope.

When parents have to become more informed than the doctors, the situation can become discouraging to both the patient and the families. Too often, we the parents find ourselves researching and education the doctors and the researchers.

Along this journey we meet some of the nicest families that are struggling just like us. Sometimes we meet people that believe that we need to stop thinking our children are more important than anyone else. What many fail to realize is that each child is a gift and they need to be the most important person in our world. The path from diagnosis to treatment is often long and heartbreaking, but our children are our most important gift.

If you have questions or would like to find more information please contact the NIH undiagnosed department.  National Institute of Health Undiagnosed Disease Program