“Being a strong voice for Isabela means to not be shy anymore. To be outspoken…I had to find strength within me.”
– Kelly, mother of young daughter Isabela
Cognitive impairment or developmental delays are signature traits of LGS that make it imperative for LGS caregivers to speak up on behalf of their loved one. Whether providing an update to a doctor, asking questions about resources, or educating community members, LGS caregivers have an ongoing role of teacher.