Sunday, 15 February 2015

Max and the nasty Dravet Syndrome

I have had a very busy week with children. I had my sisters kids come and stay for a couple of days to help her out while they renovate their home. I have looked after little Alice who is 8 months old for a day, which I do occasionally to help the mother out. I have also had my brothers kids here for a day too. My brother and his partner have 4 children all under the age of 5 and as you can imagine it is not easy juggling them and work. That is especially true since my nephew Max has a sever form of epilepsy called Dravet Syndrome. Max spends at least a week in hospital every month after having a sever seizure. It is heart wrenching to see him suffer and to see his parents go through the emotional turmoil of having a very sick child.

I didn't know much about the Dravet syndrome before Max was born but have recently done a lot of research trying to grasp what it is and what kind of future Max can expect. You see Max is only 22 months old, only 3 months older than my little girl and he has developed alongside her. They still play and when he is good, he is really good, a happy, friendly and cheerful little toddler. It took him a little bit longer to walk and say words, but apart from that his development both mentally and physically would be considered 'normal'. It is the epileptic seizures that he suffers from that set him apart. The seizures can be mild and last a couple of minutes or sever and last for over half an hour with the medication not helping. That is usually when he ends up in hospital with various doctors trying to work out what concoction of medication will help to stop the seizures and what possibly could be done to prevent the more serious ones repeating.

It is hard on poor Max, his siblings and his parents. It is emotionally draining and a major financial burden especially when you have 3 other children to care for. Medicare subsidies a portion of the medication that he needs but not 100% of it, and he is on a lot of medication. The bad news is that after the age of 2 it actually gets worse. His development is expected to decline and he is likely to develop other forms of seizures that are even more sever. He will need special care for the rest of his life and his life expectancy is something we at home don't talk about. There is hope that he will get through to early adulthood and if his development, both physical and mental, continues to develop slowly, there is a chance that he will be able to lead a semi independent life in the future.

If anyone is keen to read more about the syndrome click on the link here. Please say a little pray for my little nephew and thank you for letting me share this story of a brave little man and my week.

gorgeous Max at 5 months

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