Based on an interview with Clarissa, Mase’s mum (NSW, October 2022)
Doctors first suspected Maselino, affectionately known as Mase, may have TSC during an ultrasound when his mother Clarissa was 37 weeks pregnant. His diagnosis was confirmed from evidence of TSC tumours on his heart, brain and one of his eyes. Mase then suffered his first epileptic seizure at just 3 months old and quickly began having seizures lasting more than 4 minutes. Thankfully, due to his early TSC diagnosis, Mase’s family understood seizures could occur in TSC and knew just what to do. They headed straight to their local hospital for immediate treatment.
Mase’s TSC diagnosis means he lives with tumours on many of his body’s major organs, epilepsy, autism, global developmental delay and angiofibromas (small, red bumps on the face). Clarissa has had moments of feeling completely alone in dealing with a condition so rare that she often has to explain it to some of the doctors she sees. Ever since Clarissa connected with the medical experts at the TSC Multidisciplinary Clinic at Sydney Children’s Hospital, Randwick she knew her son was in the best possible hands to get the care and treatment he needed.
And, since finding TSA’s TSC Facebook Discussion Group, Clarissa says her feelings of isolation have significantly reduced, ‘Having some support has helped me be stronger for him. It has helped a lot to talk to and meet other families going through the same thing and sharing stories.’
The severity of impacts in TSC vary widely in each person. Mase is often mistaken for a perfectly healthy boy as his tumours are not visible and the red marks on his face are small and not very noticeable from afar. Clarissa says she has had to explain to people that, just because he doesn’t have a visible disability, he is going through a lot. ‘We still haven’t been able to control his seizures. Some days he has up to 6 a day and then he may not have one for 2 weeks. We don’t know what triggers them.’ Clarissa says she feels helpless when Mase has a seizure. He also experiences behaviour changes because of his seizure medication. ‘At the moment, my son’s in this phase where he is lashing out and hurting himself.’
I want to help other kids and families living with rare medical conditions like TSC know they’re not alone. There is someone else out there fighting the same battle and it’s okay to be different and they don’t need to feel left out.
To better help Mase understand what is happening to his body, together, Clarissa and Mase created a simple, easy-to-understand book that Mase could relate to. ‘It was like a Saturday project with him. I typed up the story and he drew the pictures.’ The result is their 24 page paperback book, Did you know… I was born a TSC hero! Clarissa explains: ‘I want to help other kids and families living with rare medical conditions like TSC know they’re not alone. There is someone else out there fighting the same battle and it’s okay to be different and they don’t need to feel left out. We are so proud of the book. You can buy a copy on Amazon.’
Meanwhile, the battles continue for Mase and his family, with Clarissa describing the most recent check-up as quite confronting. The family were advised to consider brain surgery to remove the tuber that is causing the seizure activity. While brain surgery does come with some concerning risks, it has been proven to be successful in managing unstoppable epilepsy in TSC when all other options have been exhausted.
Clarissa says she feels comforted knowing she is not alone and can reach out to TSA and the TSC Community for information and support.