My son started showing signs of NF at his 2 month visit. We went to CHOP and started the process to see If he did have NF. We had no precursors to this and we weren’t familiar at all with NF. We had so many questions and it was all “it depends” and “every case is different”. After being educated all you can do as a parent is hope for the best and just pray.
The next step was the MRI. This whole process is very scary as a parent and to watch your baby go through this is even harder and knowing you cant do anything is even worse. You feel helpless. We just recently got his results and he has a tumor in the front of his skull. We now are going through and MRI every three months to wait and see what his tumor does. Everything in unknown. No questions have one answer. So right now we take it one day at a time. Please help to join the fight to find a cure!