Harrison (2025)

Written by Amanda, Harrison’s mum (South Australia, May 2025)

Amanda first shared Harrison’s story with TSA in 2020 when he had just turned 5 years old. We are so grateful to Amanda for providing us with this update on their story.

Since we last touched base back in 2020, we have seen such a positive change in Harrison and his journey with TSC.

Harrison is currently in year 4 and attending a mainstream school. Although he is still slightly delayed, he has an incredible team to support and assist him with his education and day to day living. Harrison’s school provides an amazing assisted learning program and together with his OT, Physio, Psychologist and Social Wellbeing Assistant, Harrison is living a fairly normal life and most people on the outer are unaware that he is living with TSC.

Harrison continues to remain seizure free. We are very blessed that all his tumours remain stable, save for the slow growing AMLs (kidney tumours) and his facial angiofibromas which continue to grow but are assisted with regular use of sirolimus cream. We are so lucky that hospital visits are few and far between these days with just routine MRIs, ultrasounds and specialist appointments to monitor his organs.

Harrison’s social anxiety and behaviour continue to be our biggest hurdle. He struggles in big groups and gets overstimulated easily which can often result in complete shutdowns. These are becoming less frequent due to some amazing strategies from his team.

Harrison is extremely passionate about sport, playing daily in the backyard, but is unable to play in any team sports due to his anxiety and difficulty following fast paced instructions. We are however thankful that he has gained 2 wonderful school friends who are helping him to come out of his shell more and more and tackle things outside of his comfort zone.