The Australasian Tuberous Sclerosis Society

Belinda is married to Charles, and is a mother of three, Sarah (14), Adam (12) and Edward (6).

Sarah was diagnosed with TSC when she was 2 days old and seizures began at 6 weeks. This is when we made contact with ATSS to understand the condition.

I decided to become a member and have volunteered over the years to do the treasury work, assist in fund raising and to support the Committee.

Sarah’s epilepsy ranges from petite mals, complex partial, and now experiencing some generalized seizures. She has maintained fairly good control on two anti-convulsant drugs for nearly 14 years.

For 12 years Sarah saw Ears/Nose/Throat specialists for ear grommets, she has a mild hearing loss in one ear. Her facial rash (angiofibroma) has been treated, with follow-ups required.

Physiotherapy began as a baby to assist her low tone in her upper body. Physio has begun again for her scoliosis and kyphosis.

Sarah is able to communicate with limited speech and Speech Therapy has always been in force throughout her school years. She is currently taking part in a communication project, involving computer assisted devices.

Sarah attended a regular Day Care Centre for her first 2 years. She spent 3 years at Macquarie Uni Early Intervention Centres and then had 3 years in a mainstream school. She has attended 2 Special Schools, with high school focusing on Living Skills and Work Experience.

Sarah loves swimming, horse riding, weekly Scout meetings and outings, Saturday Fun Club, and Sunny Days, a teenage social group.

She also enjoys discos, parties, dancing, bowling, music, movies, eating, sleeping, big planes and holidays!