Our story begins with Emily.
Emily was a healthy, thriving baby—until shortly after her first birthday. She began losing her motor skills and speech, and started missing milestones. After months of searching for answers, she was diagnosed with Rett syndrome, a rare genetic neurological disorder that impacts mobility, communication, breathing, fine motor skills and nearly every part of life.
Emily cannot speak. She cannot walk independently. She faces seizures, anxiety, scoliosis and daily physical challenges.
And yet—she understands everything.
She feels deeply.
She loves people.
She laughs.
She has preferences, style and personality.
The hardest part wasn’t the diagnosis—it was watching how others responded.
Children stared, avoided, or didn’t know how to interact. Adults felt unsure or pitying—not out of cruelty, but lack of exposure.
Emily’s mom, Karli, realized something profound: kids cannot learn compassion for children with severe disabilities without spending time with them.
The Emily Hughes Foundation was created to ensure that children like Emily are not invisible and that schools, families, and communities have the tools to understand, include and support them.
The Emily Hughes Foundation helps students, families, and communities grow in compassion, understanding, and inclusion.
We create opportunities for meaningful learning and lasting relationships by providing schools with the tools to engage, connect with, and include children with disabilities, while supporting families with the resources they need to care for their children with dignity and confidence.