Winnie’s PMG Story

Winslow was diagnosed with Bilateral Perisylvian Polymicrogyria at 9 months of age. She wasn’t gaining much weight, despite nursing frequently like a newborn. She also wasn’t meeting milestones or babbling much. She would smile and giggle, but she had trouble sleeping at night. When we took her to the pediatrician for her 9-month check up, her doctor asked us to take her directly to the children’s hospital about 90 minutes away. She is the youngest of four, so we got our other three kids settled with a grandparent and made the drive to the hospital. She was admitted and they started tests right away.

After the first round of tests and blood work came back normal, the specialist recommended a brain MRI. When a whole team of doctors, residents, and nurses came into our room, we knew it was something significant. They explained that Winnie’s facial muscles were affected and she was only eating until she was tired and never getting full. She got her first NG tube and gained 1.5 pounds in the first week. She immediately started sleeping through the night because she finally got her belly full! That period of our lives was so scary, but her doctors said she’d write her own story and do things on her own terms. They were so right!

Now Winnie is 8 and she’s happy, creative, imaginative, and loving. She enjoys going to school to see her friends and hiding from her siblings. She has the best giggle! She is our social butterfly with an ornery streak. She is nonverbal, but is great at communicating her needs. She knows her colors, shapes, numbers, and letters. Her favorite color is yellow, so she made sure to pick that for her newest wheelchair. Winnie is going beyond the label of PMG by lighting up the world with her cheerful attitude. She participates in power mobility chair studies to help local PT students learn how to work with children with special needs. She has done a photo shoot to promote inclusion of people with disabilities in dental offices. She makes friends wherever she goes! She is stubborn and fierce, but so compassionate. She gives the best hugs and blows kisses to everyone when she leaves. She inspires us everyday!