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Stories of NF: Miguel M.

By September 21, 2020December 5th, 2023NF1, Story of NF

When Miguel was born and I noticed his café au lait spots, I knew that Miguel had NF1. It was just a feeling I had; since I also have NF1 I knew he had it. When Miguel’s pediatrician saw him she asked me if it ran in the family, all I said was, well I have it. She said we should do some testing; Miguel was 11 months when he was tested and it was confirmed that he had NF1. My heart sank to the ground not knowing what was to come. Tumors? Surgery? Therapy? So many thoughts ran through my mind. What kept me calm was knowing the same doctors I saw he was going to be seeing. Any parent that has had to watch their child go through the MRIs know it’s extremely nerve-recking. It’s the worst; just getting a phone call my heart starts beating and millions of emotions go through my mind. 

Miguel living with NF has had its ups and downs. We get looks all the time at the store. We get questions about what’s wrong with him, why does he walk like that? Why isn’t he talking clearly? People don’t know that having NF can cause children to be delayed, and I have to explain further. But then more questions come: how will it affect his future? There is no telling on how the next five years will look like. I just know to take it one day at a time. We get asked if I’ll have more children, if I can pass NF down again. As of right now Miguel will stay an only child so I don’t have to pass down NF again. Miguel does have a tumor on the nerve of his spine and as of right now we won’t know if it will be removed. What keep my family motivated is Miguel’s smile! It’s so contagious that when I have a bad day just hearing him call me mama or make me laugh, it makes my day!

Miguel also loves to watch movies! He loves the movie Despicable Me! He loves to dance, he loves to play with his blocks and his cars! But mostly he loves to go on car rides in his dads car! And say “daddy go go “ vroom vroom! He loves being with his dad. I like to encourage his family to read about NF so they know what’s to come. We love Miguel and can’t wait to see what the future holds for him. 



Take one day at a time

Dream vacation
Disney World

To eat all the cookies he can!