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Maddie Sassa – Featured NF Champion for June 2016

By June 16, 2016February 5th, 2024Awareness, NF1, Story of NF

“We noticed Maddie’s first symptoms, café au lait spots, when she was 18 months old. When she was three years old, she was diagnosed with NF1 and underwent 15 months of chemotherapy to treat an optic glioma behind her right eye.

“In 2012, at the age of 13, she had brain surgery on a tumor in her right temporal lobe. She then had to have another 15 months of chemotherapy followed by another brain surgery. After being stable for a year and a half, she endured her third brain surgery last summer. Currently, Maddie is going through chemotherapy for a brain tumor found in November.

“Maddie’s friends and family have been extremely supportive and have raised money for NF research over the past four years by running in Cupid’s Cranium 5Ks, participating in NF Walks, selling Bravelets, and ‘freezing for a reason’ in Cupid’s Undie Run.

“Maddie loves cooking, baking, playing with her younger cousins, and doing arts and crafts. Despite all of her medical difficulties, a smile is never far from her face. Maddie’s  strength and positive outlook help her overcome every challenge that comes her way. She is a true hero with a long life ahead of her and we love her very much!”

Amanda Sassa, Maddie’s sister