Logan Thomas

In October 2007, when our daughter,Logan was just 6 months old, her pediatrician informed us that she could possibly have a genetic disorder called Neurofibromatosis 1. It is a rare genetic disorder that is passed on by a parent in about 50% of the cases and in the other 50% is a mutation. Logan’s is believed to be a genetic mutation since neither her father, nor I have any of the criteria. In August 2010 she was officially diagnosed with NF1 after her neurologist found 2 small neurofibromas on her head. An MRI in September 2010 came back normal. We thank God for this! She had her first Neurocognitive evaluation in July. We are now learning ways to support her related to learning. Unfortunately, NF is a disorder that can look different for different people. It can be mild or it can be severe, or anything in between. The hardest part for us as parents is not knowing what this will look like down the road, not being able to “fix” this for our daughter. We need a cure!