This blog has three purposes.

First, I am writing this as a sort of therapeutic activity to deal with my new reality.

Second, I am writing this to keep family and friends informed of our journey.

Third, I am writing this to help any other families who find themselves in my shoes, and to inform others about NF.

My youngest son, Benji, was diagnosed with Neurofibromatosis type 1 (NF1) on April 29, 2015. He is 9 months old. Only a few months ago I had never heard of this disorder. If you Google it, the search results produce very scary images and outcomes. However, these are not the outcomes of the majority of NF patients.

Neurofibromatosis (or NF1) is a genetic disorder that can cause benign tumors on nerves anywhere in the body. One in 3,000 babies is born with this disorder. It can be inherited or it can be a random mutation. There are varying degrees of severity of the disorder, and there is no way to predict how severe each case may become. There is no cure. For more information on Neurofibromatosis and what you can do to help, please visit CTF.org.


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