When Mia was three, we took her to the pediatrician for a routine checkup. During the appointment, her doctor made note of the birthmarks on her belly. I mentioned a few other birthmarks as well - light spots she’d always had that we’d never thought much about. After counting and measuring Mia’s spots, the doctor handed me a WebMD printout about neurofibromatosis and told us to schedule an appointment with an ophthalmologist to check for freckling on her irises.

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At that visit, the ophthalmologist expressed concern and ordered follow-up imaging. The scans confirmed an optic pathway glioma - and with it, a diagnosis of NF1.

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Through the Children’s Tumor Foundation, we were connected with Nurse Alexis Kennedy and Dr. Klesse. They were the silver lining of those dark days. Over the next year, Mia had MRIs every three months to monitor her optic pathway glioma. Unfortunately, it continued to grow. Then, slowly, the growth stabilized. Eventually, the tumor began to shrink - which truly felt like a miracle. 

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Today, Mia sees her wonderful specialists annually - Dr. Klesse and Dr. Wang. Two years ago, she was also diagnosed with ADHD and now takes her "concentration pill” to help her focus and do her very best at school.

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For Mia, life with NF1, ADHD, and “brain pictures” is simply her normal - it’s not something she dwells on. Our little lovebug is smart, wild, caring, and creative in ways we never could have imagined. We joke that she starts each day like she’s been shot out of a cannon - and honestly, we’d be thrilled to have just a fraction of her energy.

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We are deeply grateful for Texas NF, the Children’s Tumor Foundation, and Mia’s incredible doctors. And to our family and friends - thank you for cheering Mia on and surrounding our girl with so much love and support.