I knew about my son’s diagnosis right away when I saw café au lait spots on him. My husband has NF1, so we already knew there was a 50% chance our son would have it, too.
As a mother with a son who has NF, it changed everything. Knowing he might have learning disabilities and might need more help in the future, I started saving for his education right away. I also started saving for any cosmetic procedures in the future, knowing insurance companies don’t always cover things they consider “cosmetic.”
A small bump appeared on my son’s head about a month ago. I worry that even though they’re usually non-cancerous, that it could be cancer. As a mother we tend to think the worse. I worry about the treatment from others he will get in the future. Will he be bullied? So many people have no clue what neurofibromatosis is and sometimes I wonder if people were more educated about it and knew what it was (the way everyone knows what cancer is) they would have more sympathy and not bully. We need to keep spreading the word. Everyone needs to know what NF is.
I work full time at a bank as a supervisor. Jermaine Jr. is my and my husband’s first child. He is our pride and joy. He loves being outside getting fresh air and he LOVES looking at animals. They make him laugh! He loves all his rattles and plays with them more than I have ever seen any baby play with actual baby toys!
-Jermaine’s mom Betta
QUICK TAKESDream vacation Looking forward to taking Jermaine to Disney when he is old enough! Superpower Cure NF! Favorite song I love singing “You are My Sunshine” to my baby boy |
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