Cornelia de Lange Syndrome: In the Realm of Caregivers and Surviving
thesisposted on 28.04.2018, 00:00 by Madissen Hester
Cornelia de Lange Syndrome (CdLS) is a rare congenital disorder that occurs in 1 in 10,000 live births. The goal of this research project was to further understand the impact of caregivers on children with disabilities, specifically CdLS. The purpose of this research project was to critically analyze the caregivers of those with Cornelia de Lange Syndrome, using the social model of disabilities as a theory and Derrida's "structure" as a method; I argued caretakers of those with disabilities, specifically CdLS need to be given support, as well as resources, in order to maintain a healthy environment and family for the individual with special needs. In the study, it was found that caregivers would like more resources for their child, whether that be awareness, respite, or long-term care facilities.