Meet Kendall

Diagnosed with NF1 at 10 weeks old

When Kendall was born, her mom, Stephanie, knew something was different about her. “Being a nurse, everyone was just telling me I was being overly concerned,” Stephanie says. “But there were just little details that I noticed as a mom, as any mom would, that just didn’t seem right."

At 10 weeks old, and after a period of uncertainty surrounding her condition, doctors diagnosed Kendall with Neurofibromatosis Type 1 (NF1).

Neurofibromatosis (NF) is a rare genetic disorder that involves the development of tumors that may affect the brain, spinal cord, and nerves. The most common type of NF is neurofibromatosis type 1 (NF1).1 NF1 is commonly recognized in early childhood and is a lifelong progressive condition that affects all types of people, regardless of gender or ethnicity.2,3,4

During the first year following Kendall’s diagnosis, she underwent multiple surgeries and had a feeding tube put in. Today, Stephanie continues to work with Kendall’s doctors to manage her disease and care, including routine testing and monitoring.

Today, Kendall, doesn’t want to be defined by her NF1 diagnosis: “Don’t let NF1 stop you. And just because you have NF doesn’t mean you’re not normal,” she says. Kendall loves singing, music and swimming, and studying one of her favorite subjects in school, science.


  1. Tamura R. Current Understanding of Neurofibromatosis Type 1, 2, and Schwannomatosis. Int J Mol Sci. 2021.22.5850
  2. Ly K, Blakeley JO. The diagnosis and management of neurofibromatosis type 1. Med Clin North Am. 2019 Nov;103(6):1035-054.
  3. Tonsgard, JH. Clinical Manifestations and Management of Neurofibromatosis Type 1. Semin Pediatr Neurol. 2006;13(1):2-7.
  4. Hersh J, et al. Health Supervision for Children With Neurofibromatosis. American Academy of Pediatrics. 2008: Volume 121, Number 3