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Westin was 3 years old when he was diagnosed with NF1. Westin has a speech delay, café au lait spots, and scoliosis. When Westin was 4 we had the genetic testing done to confirm diagnosis; he has NF by spontaneous mutation.
I was about 4 or 5 months old when I was diagnosed with NF1. In 1st grade I found out I had a tumor in my jaw and I had it removed. I have had about three surgeries on my bottom left jaw and never had teeth grown back since my tumor.
Duty Free Americas and the Falic Family Foundation Host Golf and Tennis Charity Event That Raises $325,000 for NF Research
The Children’s Tumor Foundation is exceptionally thankful for the generous support of Duty Free Americas and the Falic Family Foundation through their successful golf and tennis charity tournament held in Miami this week. Under sunny skies and with the participation of an enthusiastic and big-hearted crowd, over $325,000 was raised to support our mission to fund critical NF research, with more donations expected to come in following the event. We are particularly grateful for the leadership in this effort shown by Simon Falic, Jerome Falic, and Leon Falic and the entire Falic family.
When Dylan was eighteen months old, we found out he had NF. He was failing to thrive and developed strabismus at age 4. Even after three surgeries in each eye, he lost the ability to see out of his right eye while the left one is open. He also lost all the useful hearing on the right by age eight and is now completely deaf on that side. These are nerve-related losses that have no treatment.... yet!.
I was diagnosed with NF1 at 9 months old. My parents truly had no idea what neurofibromatosis was at the time because it was fairly new. I had a bump on my forehead that was quite noticeable, and they were afraid that it was a brain tumor. Thankfully it wasn't, but it was one of the scariest times because they were afraid of losing me.