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  • 9 Years Old

  • Nemaline Rod Myopathy

Brylee was born with a rare disease, Nemaline Rod Myopathy.  She spent time in the NICU at Children’s Healthcare of Atlanta.  Brylee had a tracheotomy procedure in order to keep her alive.  It was also explained to Brylee’s family that kids with severe Nemaline, like Brylee, typically live 18 months and can only use their eyelids since the disease affects the muscles.  Brylee has defied the odds, she can move her arms with help, kick her legs, and talks nonstop.

“Brylee loves animals and wants to be a veterinarian when she grows up.”

Brylee is now 10 years old and has had multiple surgeries and visits to the hospital. Brylee is a fighter!  Brylee can drive her wheelchair around the house.  She loves playing with her cousins and friends along with trips to the playground.  Brylee loves animals and wants to be a veterinarian when she grows up.  Brylee and her family are so excited about her accessible bathroom!

Photography by Kristi Weaver Photography