Wren

Our son Wren has two mosaic mutations on the TBL1XR1 gene. He has been through a lot in his four years - surgeries and procedures for, among other things, issues with his digestive system, heart (PDA closure), and brain (decompression surgery for Chiari malformation). At two-and-half years old, Wren started having seizures and was diagnosed with epilepsy. Without medication, he can have dozens of seizures per day. He also has significant intellectual disabilities, gross and fine motor impairments, vision issues (strabismus), and low muscle tone. Wren used to have a severe feeding intolerance. Although his feeding has improved significantly, he is still partially fed through a g-tube.

Wren is incredibly resilient, sweet, and loving. Although Wren is non-verbal, he finds ways to let us know exactly what he likes (swimming, helium balloons, his drum set, Dad’s jokes and games).