16: Steph Papas: Navigating An Extremely Rare Diagnosis of TARP Syndrome

In this episode I speak to my first international guest, all the way from Australia! Steph Papas joins me to chat about her 2 year old son Archie who has the extremely rare genetic condition TARP syndrome. We discuss the emotional resilience needed to deal with a potentially life limiting diagnosis, the decision to delay telling more than a handful of people, and how difficult it is to find peer support with such a rare condition.Steph has such a beautiful outlook on how Archie’s diagnosis has changed her as a person, and the way in which it has made her live in the present instead of always planning ahead. Tags: TARP syndrome, rare genetic condition, SEN parenting, SEND parenting