We had moved from a quiet neighborhood to a go, go, go city which meant switching all our providers. When we got to our new location, my son went to his 9 month checkup. At that checkup, the new doctor said, “these brown spots look like café au lait spots”. I said, “huh?” I have never heard of them before. He went on to explain neurofibromatosis and gave us a referral to the Children’s Hospital of Wisconsin. When we went there, we spoke with a specialist and a genetic counselor. They looked my son over from head to toe and just off appearance they determined he had NF1. At that point, the doctors offered us the option to get his blood tested to see if he did “officially” have NF and what type of NF it is. We went to do so, and the results came back that RJ has 30% of his blood cells that are affected. Recently, we were advised to do an MRI on his brain stem and head to make sure there were no growths. That was probably the hardest thing for us parents to go through because he had to get put under. Seeing that broke my heart because it made everything real.
Fortunately, he is healthy and after that, we were told to have yearly visits to check his eyes and yearly check ups with the genetic counselor. He has passed all the milestones he was expected to and is continuing to show how strong he is. He is 3 now, and by spending time with him you would never know he has this disorder. I am so grateful for that doctor who gave us the right information. We have shown our support for NF and will always do so.
-Alexis (RJ’s Mom)
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