Hi. I'm Sylvie.

Sylvie, the daughter of Jacob and Lauren, was born on Nov 2 2012 in Austin, TX.
At the age of 4 months she was diagnosed with Neurofibromatosis Type 1 (NF1) and Tibial Dysplasia, a rare complication associated with NF. Sylvie and her parents were suddenly faced with challenges and choices that no parent - or child - should have to experience.

You can see Sylvie's story here:

UPDATE 2026: Sylvie has had five additional surgeries since this video was made, to replace rods in her left leg as well her right leg as to assist with leg length discrepancies. We facing additional challenges for our brave girl. A series of MRIs taken in 2019 revealed an optic glioma (tumor on the optic nerve), a small lesion in her spinal cord, and multiple minor lesions in her brain. Hopefully these will all stay benign and not grow but that could change. Sylvie later developed an aggressive form of scoliosis related to NF which required her to wear a back brace 12+ hours a day for two years. It reached a critical point in 2023 and she had major spinal VBT surgery at NYU Children's Hospital in NYC. That surgery was not able to resolve her spinal problems, so unfortunately she had to undergo a 13-level spinal fusion two years later in the summer of 2025 at the Nemour's Children's hospital in Delaware. She is doing great currently all things considered, but she has gone through more than any chile should every have to - TREATMENTS AND A CURE for NF are still urgently needed!!