Rory's Story
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Rory's Story

Rory was a fantastically bright toddler with a keen interest in books, stories, imaginative play, craft, even reading, when at age 4 he had a massive seizure. We were told to go home and forget it had happened. Then it happened again and again, huge status epilepticus seizures that seemed unending. Rory was eventually diagnosed with rapid onset Rasmussen's Encephalitis in September. By December he was having hundreds of partial seizures a day. A biopsy in December 2000 confirmed the diagnosis unequivocally.

We had entered on a slippery slope of dozens of different drugs, sometimes trying several within a week. It cost a fortune. Years later when the pharmacy changed hands, I was asked if we had been to the pharmacy before. My reply was yes, in fact, we had basically paid for the renovations!

Life descended into a very small, dark space. Andrew would leave for work, first making sure I had had my shower, and everything was set up for the day. Rory and I would move to the loungeroom, where we would play the same thing over and over and over, in between fits, because Rory's once vibrant imagination had deserted him. His right arm had become weak and his face twitched uncontrollably. By 9.30 am we were both asleep on the floor (safest place for a fitter!), him due to Clobazam, me due to exhaustion from sleeping on the floor next to his bed for 6 months.

Then, in February, Rory had a left anatomical hemispherectomy performed by Dr Mark Dexter, a wonderful young, confident surgeon who had performed one such surgery beforehand. It went wonderfully smoothly. Rory began the long process of rehabilitation. After 12 weeks in Westmead Children's Hospital, and intense therapy from excellent physios and others, we went home.

Rory went back to pre school. He had no use of his right arm at all and I armed him so to speak, with a paper holder, dycem matting and the like. In the next 6 months he started Infants school. He used an electric chair, sometimes a push wheelchair. He had a ramp up to his room. He loved school.

Rory has a recumbent bike, steered with one hand. He has played hockey in a weekend team. He learnt to swim. He cares entirely for himself in terms of self care. He is very keen PS3 player and is very good at it! He also plays the piano with one hand! And golfs!

He is now in High school, about to start his final senior years in 2013. Rory is doing the same course as everyone else, which allows for tertiary admission depending on your marks. Instead of doing this over 2 years as per usual, Rory will spread it over 3, in order to help with memorising so much material. He works very hard to stay in the game academically and everyone is so proud of his achievements.

This is Rory's, and our story, so far. It has been a long but amazing journey, that has touched many people in our lives. We have lots to still do, such as get back to basics and think about using the affected hand and he is currently undergoing therapy for this. We are going to change the law and get him a driving licence! With these kids, the sky's the limit!


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