Our little man, Sawyer, was officially diagnosed with NF1 when he was 8 months old, though we had been pretty sure of the diagnosis since he was 3 months old. When he was born he was in the NICU (for an unrelated reasons) when the nurses noticed a slight bend in his leg. He was 3 days old. Since then he has been to the doctors at least every other month to see a specialist of some sort.

The combination of the tibial dysplasia and 32 cafe-au-lait (birth marks) lead to his diagnosis. He is now 20 months old. The sever tibial dysplasia has kept him from walking. We are currently on a very difficult route of trying to figure out if multiple surgeries can fix his leg or if it is better to amputate it below the knee. No parent should have to cut off their son's leg but it may be his best option. He has had an MRI to check for hydrocephalus, which is another common side affect of NF1. Luckily at this point there is no sign of hydrocephalus, just a large head (another side affect of NF1). He will need MRI about every 2 years. He luckily only has two small neurofibromas. His fibromas are about the size of a mole and show up about every 6 months. If that is all they do we will be very happy.

Currently our son is to young to understand that he is different. Of course we are always aware and watching for other complications that NF1 can cause. He has his eyes check for fibromas yearly (the only method to get rid of them is chemo). We watch his blood pressure for hypertension. We watch for learning disablities, plexiforms, scoliosis, itching, headaches, cancer, heart defects, epilepsy, and several other growth defects.

And with all of this he is just a normal little boy. Our little Bam Bam, our little devil, our beloved little man.

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