Tiny Sparrow Foundation | A Non Profit Organization » A Picture of Hope

Alexa | Neurofibromatosis and Optiglioma | Massachusetts

Alexa was diagnosed with Neurofibromatosis and Optic Glioma at 14 months old. The doctors found a Granny Smith apple sized tumor pushing on the right side of her skull, causing partial paralysis. In her 8 short years, has endured chemotherapy, 6 brain surgeries, 3 port surgeries, a shunt placement and much more. After all of this, due to the large size and precarious location of Alexa’s tumor (wrapped around her brain stem) it has been deemed inoperable. Alexa is currently in Boston receiving treatment with help of the Jimmy Fund Clinic. Her tumor recently started to grow again and began blocking her ventricels causing hydrocephalus. This left Lexy blind. Lexy now also suffers from seizures. Alexa’s family shared with us that she prays every night saying “Please God, take away this bad tumor in my head so I will not be sick and have pain anymore.” Her mother shared, “Despite many hardships, expecially being away from family for many months at a time for treatment, she always smiles, and rarley complains about what she is going through. She stays positive trying to make others smile with her knock-knock jokes and bright personality.

She misses her dad and brother terribly, yet she endures, her strength and bravery shining through. She is a true hero.” Alexa continues to live with an exuberance that inspires everyone around her.

A heartfelt thanks to Tiny Sparrow Photographer Jill of Jill Serrano Photography who continues to support our Foundation and families with her gift from the heart and behind the lens.  Meet the beautiful princess Alexa, who at age 8 has overcome more hardships than most people do in their lifetime.


Regina Anderson-shows

What a beautiful young lady! I have nf1:)

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