Being rare is not a death sentence, and nobody can understand this better than a parent of a rare child. In this episode, host Avantika Shrivastava speaks with Tresa Joseph whose daughter has been diagnosed with an extremely rare genetic illness- 9P Deletion. While speaking fondly of the transformatory impact her daughter has brought in her life, she also voices concern due to major differences between America’s healthcare system (where Amelia was born) and India’s, their homeland, in accessing medical care. She discusses these challenges, and obstacles which the young family has had to face during the COVID-19 pandemic.
This episode delves into the choices that almost all parents of children with rare diseases have to commonly make, such as deciding on medical treatment and sending their children to school.