World NF Awareness Day.

Last year at this time, I had no idea that the little life I still carried inside me had a genetic disorder. Like any mothIMG_3814er, I hoped and prayed he would be healthy. And he is, he just has more things that could potentially go wrong for me to worry about than your typical child.

When my son’s doctor first mentioned that he could be showing signs of having NF, I had never heard of it. Neither had my family. Neither, I’m sure, have most of my friends. It is amazing to me that so many people are affected by this disorder, but so few people have any idea what it is. One of my reasons for starting this blog is to spread awareness of NF, and hopefully increase public support for research to try to find a cure for it someday.

Neurofibromatosis can cause a benign tumor to form on any nerve tissue, anywhere in his body, at any time. So far we have not noticed any, but there is no telling if or when he will develop them. Rarely, these tumors can turn cancerous, but there is no way of predicting this. There is no test that can determine how severe any one case of NF will be. It can also cause short stature, development delays, and learning disabilities. So far, Benji has the first two of these qualities. Time will tell if his height is permanently inhibited or if he is just slow to grow for now.

IMG_3803Aside from being small and a bit behind in motor skills (although he has already made great gains in the past month), Benji looks like a normal baby. He is developing his sense of humor. He loves the swings at the park. He is starting to babble more each day. I’m working on not letting fears for the future intrude on my time with him now. One day at a time, I’m going to give him the best life possible, just as I do for my other boys.

If you are reading this blog and are just learning of NF, please honor my son and the 1 in 3,000 people who are affected with NF by sharing this with others. We need this disorder to be known and we hope and pray for a cure. If you want more information, please visit Thank you for your support.


One thought on “World NF Awareness Day.

  1. This is really beautiful! It’s truly a gift for NF awareness to have such an amazing writer as yourself passionately dedicated to spreading that knowledge. I’m very happy to hear you purposefully being present in every day, and not allowing your fears about the future to overtake your joy in the present.


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