The Australasian Tuberous Sclerosis Society

Full-time mother of two, Amelia (7 ½) and Lachlan (3 ½) and I work part-time as a job share secretary for Lend Lease.

Our daughter Amelia has TS, diagnosed at 4 months, she has a moderate intellectual disability, associated developmental delay and intractable epilepsy.

Her epilepsy is by far the most difficult aspect of her condition and if you could take away the epilepsy things would be almost normal, well you could cope with the rest.

She has had 5 trips to hospital this year and we have tried numerous new drugs, another new one to start soon. She is a happy and loving child when not affected by the side effects of unsuitable drugs and she is due to move from Special School to an IO support class at the local primary school next year. She loves the beach, her dog Simba, her specially modified bike and all outdoor activities.

I have done a previous stint on the ATSS Committee and have returned after a break. I hope to be able to contribute in any way I can to the Committee and support the hard work of ATSS. My areas of experience with TSC are liaising with Doctors and other health professionals and experimenting with a never ending list of anti-epileptic medication.