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The Boy behind the Charity – Meet Matthew Williams

MatthewMatthew Williams was born on the 8th September 1994 and at the age of nine months old he had his first seizure, this seizure lasted for about twenty minutes and was the start of a very long and traumatic journey for my family.  At one stage Matthew was having prolonged bouts of status epilepticus and many nights I spent in hospital with him in intensive care not knowing whether he was going to live or die. I watched my son seize for over an hour and forty minutes in some cases and the future looked extremely bleak.  Matthew was put on a lot of medication and the side effects from these started to become unbearable.  In the beginning when your child has a seizure, you hold them and pray that they are going to be ok, that they are not going to die but for us it got so bad that when Matthew had yet another prolonged attack, I would hold him and pray that he would die as I just couldn’t bear to see him suffer so much – then of course the guilt takes hold of you for even thinking such a thing.   The more medication Matthew was put on, the worse his seizures and quality of life became.

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Alice – A Siblings Perspective…

AliceI am Alice and I want to share with you what it is like as a sibling, living with someone with Dravet syndrome, and the support you can give to your children that are perhaps going through the similar things I did.

The earliest memories of Matthew aren’t the best ones in the world. I remember him being very violent towards me and he would bite, hit, scratch, pinch and pull my hair. I didn’t want to be around him and as a result we didn’t have the brother, sister relationship that I longed for, especially as a lot of my friends had it.

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