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: Sylvie has had three additional surgeries to replace the rod in her leg since this video was made, and we should be all done with surgeries on her left leg! Sylvie graduated to an AFO brace last year (so no more pinching metal hinges on either side of her knee, and nothing under her foot). We are now 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. Also, Sylvie has developed an aggressive form of scoliosis which requires her to wear a back brace 12+ hours a day and will likely require spinal surgery in the future. All in all, she is doing great, but we need effective treatments and a cure more than ever!