The Australasian Tuberous Sclerosis Society

I’m married to David and have two boys Damien & Bradley. I am a stay at home Mum many say I’m never home as I am constantly running around to numerous things for my kids.

I have TSC and am mildly affected. I was diagnosed when I was 4 by my facial angiofibroma I still have them but have had 3 laser surgeries in my teens and they are not as red as they were. I now have some small angiomyolipomas on my kidneys, dental pit, shagreen patch on my back and subungual fibromas on my nails. I have NOT had any seizures or learning difficulties throughout my life and I live life to the fullest and enjoy it every way possible.

Damien (8) is not affected but my youngest Bradley (5) was diagnosed with TSC when he was 3 months old and suffering from seizures. He suffers moderate to severe development delay and doesn’t talk. He has ash leaf marks, facial angiofibromas, a white tuff of hair, angiomyolipomas on his kidneys and he did have a small heart murmur and rhabdomyomas on his heart which have now all but gone.

During Bradley’s life he has had a lot of Occupational Therapy and Speech Therapy and in 2008 had Early Intervention. He loves to watch Hi-5 and loves being outdoors playing with bubbles or jumping on his trampoline. He is a very happy, easy going little boy and full of life to which he doesn’t like to sit still for too long.

Bradley has just started Kindergarten this year 2009 at a Special Needs School. William Rose at Seven Hills and so far we have been told that he is very happy and willing to learn to some extents but would love to play more (wouldn’t we all).

I contacted ATSS in 2006 after Bradley’s paediatrician told me about the website as I wanted to meet more families who cope with the condition. My family and I have attended the family picnic days and seminars that ATSS have throughout each year and have found that there are so many people out there dealing with TSC.

I became a volunteer committee member in August 2008 so that I can help the ATSS committee to achieve goals that will make TSC more aware in the community and to the professionals.