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Alice’s Story

Alice’s Story2018-01-02T09:33:48+00:00

Alice’s Story – A Siblings Perspective…

I 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.

BAD STUFF

Alice and Matthew

Alice and Matthew

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.

As well as this, Matthew would have hundreds of seizures that lasted a long time. Being at such a young age I wouldn’t know what to do with myself, I wanted to comfort Matthew but I also didn’t want to get in my mum’s way, but on the other hand felt that if I didn’t go and see if he was alright that I was a bad sister, and didn’t care about him. It was a horrible situation and I used to end up standing in the door way and listen to Matt scream as the seizure took hold of him. This would happen every day. Watching your brother suffer, knowing there is nothing you can do to help is an awful feeling, especially when you’re so young and one that I still get upset by.

One particular night, I was around 5 and I remember waking up in the very early hours of the morning to mums voice screaming my name. As I ran down stairs, I saw Matthew lying in mum’s arms, face turning blue, making noises that I had never heard before.  Mum was telling me to get her the phone, and that Matt had to go to hospital and that I had to be strong and help her for the next few minutes. I did as much as I could to help her, trying not to look at my brother’s face, as I know I wouldn’t be able to deal with it, and as soon as my grandma came over, and matt was blue lighted to hospital I cried, I don’t think I have ever cried so much in my life, I remember thinking to myself over and over again that he wasn’t going to make it, that the was going to die.

I was sent to school as normal, but I just couldn’t focus or concentrate on anything, I was so worried.  My family thought they were doing the right thing by sending me to school, but I was so very worried. The relief I felt when my teacher came over to me in class and told me that they had had a phone call telling me that he was going to be alright was overwhelming.

On top of the violence and seizures Matthew would shout. I would be so tired all of the time, as he would shout from 3 in the morning until 11 at night, every day. The only time he didn’t shout was when he was having a seizure, so I would hear him scream in fear instead.

Due to all of these factors I was unable to bring friends round to my house in the fear that Matthew would hurt them, or scare them so much they wouldn’t want to be friends with me anymore. This really upset me and I started to resent Matthew as he would stop me doing so many things I wanted to do.

My parents split up when I was young, and I didn’t quite understand it at first. However as I got older, I found it a lot harder to come to terms with my parents not being together and my resentment for Matthew grew, as I blamed him for their split. I was so jealous of the life that a lot of my friends had, that I was angry with Matthew for having epilepsy and stopping us from being the perfect family.

I longed for a brother that would be the protector, that I could go to if something was upsetting me so he could sort it out. I wished for a brother that I could play fight with, and even have petty little arguments with, because that was what brothers and sisters were meant to do. Instead of this I had a brother that would be violent towards me and that I wouldn’t want to be around, I hated it. I found myself feeling constantly guilty as I knew what I was thinking was wrong because it wasn’t his fault that he had epilepsy and he was suffering a lot more than the rest of us were. I loved him so much but it was just so hard to show it.

The hardest thing I found was all the time he took up with my mum. Mother/ daughter time is meant to be some of the most special moments of a young girls life, but it was hard for us to do this as Matthew demanded so much attention all of the time. All topics of conversation was directed towards Matthew or epilepsy, or how tired or frustrated everyone was. I would go so far as to bite myself and blame it on Matt so that he would get told off and I would get the attention for a short amount of time.

It was such a mix up of emotions for me, the frustration, worry and anger seemed to overshadow the love and adoration I really did feel for him, adding to my guilt and making me feel like a bad person for feeling the way I did.

GOOD STUFF

When Matthew was 7, mum managed to get him on a diet called the ketogenic diet. This was a diet that could supposedly help Matt get better. When my mum explained this to me I didn’t really believe it, he had been on so many medications that only seemed to make him worse, I couldn’t see how changing what he ate could help in any way. How wrong can one person be! Matt did get better, his seizures cut down by around 90%, the violence towards me stopped and we started to build up the brother, sister relationship that I had always wished for.

It wasn’t easy adapting to his diet at first, Mum and I couldn’t eat things he wasn’t allowed in front of him, so we would result to eating chocolate in the bathroom or after he had gone to bed. However after a while it became a part of everyday life, and Matthew was enjoying the meals he was being given too.

Matthew was on the diet for nearly 6 years and it was definitely the best thing to happen to our family. His improvement is above anything that we could have imagined. Seizures drastically reduced, nothing in comparison to what they used to be like. Matt is off the diet now, and I am pleased say that nothing returned, he is just the loveliest person who I love spending time with, he loves his cuddles, spending time with his family and eating food! A highlight for me was hearing him say my name for the first time, something I never thought he would do, and think a highlight for him was the fact that my friends now come over all the time, as he loves to flirt with them, and they all love him, he is such a poser!

This diet did change our lives, Mum was told that IF Matt lived to the age of 12 he would have to go into a home because we wouldn’t be able to cope with him living with us, but because of the ketogenic diet we have just celebrated his 21st birthday, and hopefully many many more birthdays to come!

Our house has been adapted for him, we have hoists dotted all over, an electronic bed that enables him to sit up in bed as well as help us when getting him dressed and we have built him a room downstairs. So when the doctors said we wouldn’t be able to cope, I think it was a personal challenge for me and mum to make sure we proved them wrong!

Mum originally asked for the ketogenic diet when Matthew was 2, but the Doctors said that the diet didn’t work and it was another 5 years before he finally managed to get on it, but unfortunately it was too late, Matt had suffered terrible brain damage and thousands and thousands of seizures. Yes Matt got better with the diet and his seizures decreased but he can no longer walk or say the words he was able to, some of this is down to the brain damage he suffered and some of this is down to him having Dravet Syndrome – a syndrome that I now need to have genetic counselling for and also worries me about having children in the future.  But this doesn’t put a downer on our family life. We call ourselves the three musketeers, as whatever comes our way, no matter how big or small, we will fight it and do whatever it takes to make things better, and no one will break us!

WHAT PARENTS CAN DO

Since Matt has got better mum and I have been able to have the time that was missed when I was younger. We make sure that at least once a month we have a night out together to the cinema or for a meal, or even just a movie night in. It allows us to have time to talk about what’s gone on and if there is anything we need to get off our chest. This I feel is very important as it allows me to know that even with all that happens with Matt, and the attention he gets my mum is still there for me.

To me, that is the most valuable thing a parent can do for siblings. Just a small amount of quality time with you really helps to boost confidence and highlights to them that it is not all about their brother or sister, but that you can  also have time to spend with them.

As well as quality time with you, perhaps try and get your children to meet other siblings in the same position. I was introduced to someone about 11 years ago who was in a similar situation to me and she now one of my best friends and is like a sister to me. She also has a brother with epilepsy, so we were able to talk to each other about things that had happened. This was great as there were some things that I felt I couldn’t talk to my mum about so knowing there was someone else there that would understand was a comfort to me.

The experiences I have gone through with my brother have really inspired me when deciding what to do as a career and I am now at medical school training to be a doctor. I want to prove to other people and siblings that just because you may have a sibling with a disability it doesn’t mean that you can’t do what you want to do, yes it may be a bit more difficult, yes there may be a few more distractions along the way, but as long as you work hard enough you can do anything

Of course living with Matthew can be hard at times and it is different, but when he smiles or gives you a hug all of the bad stuff just gets forgotten. The bond that I have with my brother now have is irreplaceable, he is just perfect to me and I enjoy spending as much time as I can with him.  We may have got off to a rocky start, but we are now as strong as ever, and I honestly wouldn’t want any other brother than Matthew.

Alice Williams (aged 19)


Me and Matthew on his 13th Birthday.


Me and Robyn (Val’s Daughter)


Me and Mum.


Matthew ‘helping’ mum work!


At the NCYPE conference in London where I presented this talk and helped on the MF Stand.


Me with Lesley from Scotland


Doing my speech at the South African Charity Launch.


On Safari in South Africa