Noah Victoria

Noah, 22, of Lusby, Maryland, is a poet and writer, and has been an NIH study participant since she was 2 years old, when she was diagnosed with a rare metabolic disorder called abetalipoproteinemia (ABL). In addition to participating in an IRP study of metabolic disorders like ABL, Noah also has been part of the NIH’s Undiagnosed Diseases Program for several years, since many of the symptoms that make daily life difficult for her cannot be explained by her ABL diagnosis. Noah credits William Shakespeare with instilling a love of literature in her. When she’s not reading world literature, she’s writing plays and short stories as well as poetry that her mom, an artist, illustrates. You can learn more about Noah’s story by visiting the website of The Children’s Inn at NIH, where she stays free of charge when she is receiving treatment or undergoing tests at the NIH.

Posts By This Author

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Friday, February 28, 2020

Watching my dad carry the luggage to the car has become an all-too-familiar sight. It’s time for my mom and me to head to the NIH again, another trip in a lifelong journey for answers. I give my dad a long hug goodbye, and then I watch him stand alone in the driveway as we back away. The gravel arduously aches and crunches under our tires, a sound as uncomfortable as my symptoms even on my good days — few as there are.