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Stories of NF: Isabelle M.

By April 18, 2019December 5th, 2023NF1, Story of NF

Isabelle, or Bella, was diagnosed with NF1 when she was 4 months old. Right now, Isabelle has tumors on her right optic nerve, brain stem, right cerebellum, cervical spine, medulla, one on the cervical spinal cord, and a few spots in the brain that I can never remember the name for. They monitor her tumors with regular MRI scans. We finally graduated to yearly MRIs after 23 in her lifetime.

On December 28, 2010, Isabelle had a plexiform neurofibroma (pnf) on the back of her head removed (a different type of tumor), that was growing aggressively. Unfortunately, there were parts of the pnf that could not be reached without a surgery that would have been too extensive for a two year old so she has some residual pnf’s that are already growing. These tumors pop up out of nowhere and scare us, but we are just trying to take it one day at a time and enjoy are precious gifts, our children, every day.

As the disorder is progressive and unpredictable, we just don’t know from day to day, and year to year, what Isabelle will be faced with in the future. Isabelle is vibrant and full of life, and is really developing into a wonderful child.

-Isabelle’s mom Caroline



Motto Live every day and count each blessing

Favorite Song Never Ever by Taylor Swift

Superpower To heal everyone with NF