About Us
- Laura and Anthony Perfetti
- Glen Cove, New York, United States
- We have 4 children ages 10,6,3 and 1 years old. Our 6 year old Julia "ladybug" was diagnosed with NF1 when she was 4 years old. Since that day our life changed in so many ways. We live a great life, we love each other and love being with each other. NF is like a cloud over our heads, always there, sometimes raining, sometimes pouring, sometimes just gray.
I can't imagine what it would be like to have a child with NF my heart goes out to you both as well as your whole family, as NF does affect the whole family. I know because I have NF. I didn't know until I was 28, I too had a mutation at birth. I have tumors growing out of my sciatic nerve & I live with chronic pain. I still went on to get married to a incredible man who was willing to take on whatever was ahead. Although we knew each 1 of our children had a 50/50 chance of having NF we have gone on to have 3 beautiful & exceptionaly gifted children who are now turning 11, 13 & 15. NF has affected every aspect of my life but it hasn't stopped me from living. I can't control the future, nobody can really, so I enjoy the here & now. Maybe more than if I didn't have NF. There are exceptionaly bad days & even bad weeks, but I have a good cry, endure & most importantly stay strong & positive. Hopefully you as parents can look past Lady bug's NF & teach her, as you would your other children, that she is a beautiful, strong, capable girl who can be whatever she wants to be. The world is still her oyster!
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