Meet Autumn!

Author: Melissa, Autumn's Mother

Published On: 11/21/2023

Autumn was born in August 2020, while the world was focused on the COVID-19 pandemic.

I found myself navigating the first few weeks of her life in near complete isolation. My concerns about keeping our family safe and healthy were quickly replaced by a sense that something wasn’t quite right with Autumn. 

Less than a month after her birth I found a lump at the base of her skull and she wasn’t growing as fast as her pediatrician expected her to. The lump grew rapidly and started to feel like a raised vein across her scalp. Eighteen specialist visits, two scans, and a biopsy later we had a diagnosis. Actually, we had two. As my husband and I sat in hard plastic hospital chairs cradling our daughter, I listened as the doctor explained that not only did Autumn have NF1, so did my husband. 

Before Autumn's eyesight started changing, I kept telling myself that NF1 wouldn't change our lives. We could easily take her to a few extra medical appointments each year. I read NF newsletters to keep up with the research, but suddenly I saw myself reflected in photos of other NF families. Connecting with the staff at the Neurofibromatosis Network was like being wrapped up in a big hug. I found people who truly understood what I was going through as a parent of a child with NF1. While Autumn was going through treatment, the Neurofibromatosis Network submitted a financial support application on behalf of our family to one of their non-profit affiliations. Because of this affiliation, we were provided direct financial support, so Instead of worrying about putting food on the table and gas in our cars, our family remained focused on Autumn.

Autumn is now three years old and thriving. She is a joyful and caring little girl who loves to play doctor with her baby dolls, dig for worms, color, and giggle. She is cherished beyond measure. I don't know what her future holds, but I choose to be hopeful every day. I believe a cure for Neurofibromatosis will be found in her lifetime. 

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