Some journeys begin before a child can even walk. For Skylar, hers started at just 5 months old, when she broke her left leg. It would be the first of many chapters in a story defined not by hardship, but by an extraordinary spirit that refused to be held back.
A week after that initial break, doctors diagnosed Skylar with Congenital Pseudarthrosis of the left tibia and fibula, a rare condition in which the bone takes on a “joint-like” appearance, causing it to bow, become fragile, fracture easily, and struggle to heal on its own. By 15 months old, she received a second diagnosis: Neurofibromatosis Type 1, or NF1.
Understanding Pseudarthrosis in NF1
Bone abnormalities can occur in people with NF1, but pseudarthrosis is considered rare, affecting only about 5% of NF1 patients. When it does occur, it presents an enormous challenge: the affected bone lacks the ability to heal properly, making fractures a recurring reality and surgical intervention a constant companion.
For Skylar and her family, this meant years of navigating that reality head-on. Over the course of 12 years, she underwent approximately 12 surgeries on her leg and ankle, each one a renewed attempt to give her leg a chance to heal.
A Brave Decision at Age 11
After years of painful surgeries and continued setbacks, Skylar, at just 11 years old, made one of the bravest decisions a child could face. She chose to have a below-the-knee amputation.
It wasn’t a decision born of defeat. It was a decision born of wisdom, self-knowledge, and a fierce desire to live fully. The ongoing pain had become too much, and surgery after surgery had not brought the relief she deserved. Skylar and her family chose a different path forward.
Today: Pain-Free and Unstoppable
Today, Skylar is 12½ years old, and she is thriving. It has been a year since her amputation, and she is completely pain-free. With her prosthetic leg, she is living the life she always deserved — a normal, joyful, busy one.
She is in 6th grade. She loves dance and theatre. If you look closely, you’ll notice her prosthetic is actually Taylor Swift inspired, using a patterned fabric. Her favorite singer and one that brought a lot of comfort to her during procedures.
Why Skylar’s Story Matters
NF1 affects approximately 1 in 2,500 people worldwide, and while pseudarthrosis is one of its rarer complications, its impact on those who live with it is profound. Stories like Skylar’s give voice to what families navigate, the diagnoses, the surgeries, the heartbreak, and ultimately, the resilience.
While Skylar will live with NF1 for the rest of her life, she moves forward with confidence. She is proof that the path forward isn’t always the one you expected, and it can be more beautiful for it.
💜 Share Skylar’s story this NF Awareness Month. 💜
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