Jess' Story
Jessica has lived with NF her whole life. As a child, she knew she had inherited it from her mum and that it meant yearly trips to Boston to see Dr Korf—appointments that always ended with a visit to a big toy store. As she got older, those visits helped her understand her condition better and sparked a desire to help others understand it too.
Jessica began talking openly about NF with her classmates, inviting questions and breaking down misconceptions. That openness became even more powerful when, at just 16, she was diagnosed with a brain stem tumour. Surgery removed 80% of the tumour, followed by weeks of radiation treatment.
Despite everything, Jessica was determined not to let treatment define her school life. She missed just two days of school during the entire radiation process. On the day she was called out of class for her final appointment, her classmates clapped and cheered her on.
Drama has always been Jessica’s passion and her anchor. Her drama teacher lived by the motto “no excuses”—though she often said that if anyone ever had one, it was Jessica. After one hospital visit, Jessica handed her teacher her hospital bracelet and said, “Here’s my excuse note.” The response? Laughter—and a rule that only students with hospital bracelets would be excused for being late.
Living with NF has also meant learning disabilities and being on the autism spectrum, which has made fitting in—and finding employment—more challenging, even with a BA in English Literature. Jessica knows that many workplaces struggle to provide the time and support needed for training, but she continues to push forward.
She’s found purpose through volunteering at Camp Quality and at a local primary school, where her empathy and lived experience make a real difference. Frequent MRIs are still part of her life, and Jessica has found her own way to cope—mentally replaying The Lion King from start to finish while lying still in the scanner. She calls the contrast injection her “intermission” before picking the movie right back up.
Jessica loves writing and hopes to one day become a published children’s book author. Her journey with NF has had plenty of ups and downs, but her outlook is clear:
“My NF journey might have a lot of ups and downs, but I keep marching on.”
Now, Jessica is stepping up—using her voice, her experience, and her determination to raise awareness and support others living with NF.
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