Hiya, been another busy couple of weeks and Patrick's seizures have been unpredictable but frequent, with some stronger than others. We took Patrick to see his neurologist and have now agreed to try out a new drug called Rufinamide. This drug is very new to the market and has only been trialed on children aged 4 and over who have Lennox-Gastaut Syndrome (a particular type of epilepsy) which Patrick doesn't have but his seizures have many of the same characteristics. At the moment we are waiting for Fiona to finalise the details and give us the prescription as this drug has literally only just been made available and isn't even in the books yet! We'll keep you updated as and when we start the treatment but keep fingers crossed.
Changing the subject completely, most of you will have seen the article about our gorgeous babies in the local news, we've been banging on about it for the past week! As you can imagine we were so proud and completely shocked that their story made the front page! I only contacted the Echo in the hope of just getting Isaac's name mentioned, didn't even expect them to print a picture so I embarrassed myself when I walked into Sainsbury's, saw the paper and shouted 'Oh my god that's my kids!'. We can't believe the response we've had to the story, in the past couple of days since the paper was printed the amount donated online has doubled and to date he has raised £522 for The Children's Trust, one particular lady donated £50 just off the back of the article. We have been asked to take Isaac along to meet the representative from The Children's Trust at the event on Saturday so they can thank him personally and his Headteacher is going to make a fuss of him at their school assembly today. The whole idea of me contacting the paper was to have the focus on Isaac for a change and let him take the limelight for being such a special boy, that has definitely happened and for that I thank everyone who has sponsored him and everyone who have sent such warm messages. I'm sure there will be lots of photo's of the day to follow. xxx
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