The Australasian Tuberous Sclerosis Society

I’ve been married for 11 years and I have three beautiful children. My two daughters are 10 and 8 and my gorgeous son , Baylee, is one year old (9 and a half months to be exact).

Baylee has Tuberous Sclerosis.

Baylee was born ten weeks prematurely. He was 1326 grams and although he was so early, after two days he was breathing by himself. Everything looked fine until he was about 10 days old.

Because he was a premmie, the hospital did a routing brain ultrasound and it was then that they detected the tubers on his brain. When he was about 20 days old they did a cardiac ultrasound and found tubers on his heart as well. My husband and I were devastated. We didn’t tell anyone straight away, because we didn’t understand what Tuberous Sclerosis was and found it too hard to explain it to anyone else.

Everything was fine until Baylee was about eight months old. It was then that the infantile spasms (a form of epilepsy) started. We were lucky because we knew what to look out for . The day after his first seizure he was in hospital and started on medication.

He was started on a steroidal drug called synacthen, which we had to give him via an injection every day for six weeks. It made him gain 2 kilograms in that six weeks, as he was constantly hungry. He turned into our “moonface”, as well called him. He was also extremely cranky and irritable, but we dealt with this. Unfortunately the drug did not stop the seizures completely, but just whittled them down from 2-3 per day to 1 every 2-3 days. After the six weeks was up we started him on anti-epileptic drug called vigabitrin. We are still trying to find the right doage for him, because he is still having seizures.

Baylee has physiotherapy once a fortnight, because he is still unable to crawl, but he hast just started sitting up by himself. This is so exciting because we just know he will get there. We think of ourselves as lucky because we discovered Baylee’s Tuberous Sclerosis so early and can cope with this now.