Lily's Story
Lily’s journey with NF began when her grade 5 teacher noticed she was struggling with learning, which led to a series of tests. At age 15, she was clinically diagnosed with Neurofibromatosis Type 1 (NF1), after identifying a plexiform neurofibroma, café-au-lait spots, and freckling in certain areas.
“My family and I had never heard of NF before, so we always thought my spots were just birthmarks. It was a big shock when I was diagnosed,” Lily says. Thankfully, the Children’s Tumour Foundation (CTF) provided her family with clear, practical information about NF, helping them connect the dots between her symptoms—like difficulty focusing, dyscalculia, and frequent migraines—and her diagnosis.
Living with a rare condition can feel isolating, and Lily often feels alone because no one she knows has NF.
I tried to pretend everything was "normal" so I wouldn't get unwanted attention at school.
NF also brings regular medical appointments, including six-monthly MRIs for a brain aneurysm, which involve contrast injections—something Lily has a strong phobia of. Thankfully, her aneurysm has remained stable, and her scans are now yearly. She also manages frequent headaches and stomach migraines, which can make school and work challenging.
Despite the hurdles, Lily is focused on living her teenage life to the fullest. She enjoys hanging out with friends, listening to music, shopping, reading, making jewellery, and learning to drive. Her biggest excitement? Attending her school formal with friends.
CTF has been a vital source of support for Lily and her family. “CTF have shown me that I’m not alone in my battle. They’ve connected with my school, provided all the information we need, and it’s just nice knowing someone is always there when we need help,” she says.
Now, Lily is stepping up to give back. She is participating in Step Up for NF to raise awareness and much-needed funds for people living with the condition.
“For everything CTF has given me, I’d like to give back by Stepping Up. I feel empowered to raise awareness and support others living with NF.”
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