Matthews Friends - Alice's Story

Alice's Story

Untitled document

My Brother, Matthew

Christmas Morning 2007
Matthew aged 13 and me aged 11.

I am Alice Williams and I am 13 years old, and my brother is Matthew, he is 15. He has a condition called Dravet, which is a very severe epilepsy syndrome.

Matthew’s seizures started when he was just 9 months old, so my earliest memories of my brother aren’t the best ones in the world. All I can remember is the constant shouting and him being so violent that you couldn’t go near him without him either hitting or biting you. If he wasn’t doing that then he would be watching teletubbies or having seizures. He would have so many seizures I wouldn’t know what to do with myself. I didn’t know whether to get on with what I was doing but then I would want to go and see if he was alright, but also I didn’t want to get in mums way. So I would just stand there and watch my brother suffer and watch my mum give him more and more medicine that didn’t seem to make anything better – only worse sometimes. This happened every day.

Matthew’s seizures would increase if he had a cold or an illness of some kind and I remember one time Matthew had stopped breathing in the very early hours of the morning and I remember watching mum having to do mouth to mouth with him as he had turned blue and was seizing constantly. I was petrified, I thought he was going to die; mum phoned the ambulance and got my grandma over to look after me. When the ambulance went I couldn’t stop crying I really thought he would die. I have never felt so relieved in my life when I got a call from mum saying he was ok. This was all because he had a cold.

It was horrible and I hated it more than you can imagine. I would find I was disappointed a lot as well because if we had planned to do something that I was really looking forward to and Matthew was ill or had had a lot of seizures or a ‘bad day’ as we would call it, we would have to cancel and this happened quite frequently. I would be trying not to cry as so not to make my mum feel bad but it was so difficult. I was also tired a lot of the time, this was because Matt could shout until eleven o’clock at night and he woke up very early in the morning...sometimes as early as 3am and he started shouting again so mum and I weren’t always in the best of moods.

I couldn’t bring friends home because I didn’t know if Matt would hurt them or not. It was either that or they didn’t want to come round because they were scared of him, which did make me very sad and I felt like it wasn’t fair. I would also get the micky taken out of me at school because I had a disabled brother and they used to say that he was stupid and that he was so thick he couldn’t do anything. This would make me so angry you wouldn’t believe. If they said any of that to me I would lose it completely with them and start shouting and getting angry and then I would get upset. However much of a pain Matthew was back then I was still very protective over my brother and still am to this day!

The stress of it all didn’t help my parent’s marriage and they split up when I was four. I didn’t understand it at first but when I got older it really hit me. I started to blame Matthew for their split and then I thought about it and I knew that Matthew didn’t want epilepsy, so I started blaming the epilepsy for it. I really really hated it. I really wished for a brother who would look after me, play games and even argue with me - I didn’t want one that would scream, bite, hit and a brother that I would have to look after. But as soon as I had thought this I would feel so guilty inside, I loved him so much but it was so hard to show it.

I wouldn’t say I was angry, more upset and jealous than anything. I was jealous of all my friends, with all their, I hate to say it, but ‘normal’ siblings that they could have fun with and could talk to. I was jealous of all the time he took up with my mum and all the attention he had, everyone just talked about Matthew and the epilepsy. But at the same time this made me upset for my brother because I knew it wasn’t his choice to be in pain every second of the day and I felt so guilty as well. It was just a real mix up of emotions of loving him one minute and wanting to rip his head off the next and hating epilepsy for tearing my family apart.

When Matthew was nearly eight, 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. I thought to change a boy from being violent and loud to hardly having any seizures and being calm by eating certain foods would be almost impossible. But it worked, Matt did get better, his seizures have been cut down dramatically, no more biting or scratching me and the screaming stopped and no more medicines. I thought it was a miracle.

Although mum and I did take to eating chocolate in the bathroom or after Matt had gone to bed, but then mum created KetoChocolate so we didn’t have to retreat to the toilet with our Maltesers anymore! In fact, Matt ended up getting Blueberry muffins and a ketoshake for breakfast whilst I got stuck with weetabix! The only thing I wasn’t too keen on was that Matt was still fixated with teletubbies; he adored them so much I can now probably recite most of the episodes, but after all we went through, I can live with that.

Matthew was on the diet for nearly 6 years and it is certainly the best thing to happen to our family, it made Matt so much better. Hardly any seizures, no more trips to hospital, he is really cuddly now and happy and smiley and he is not violent at all now. Matt has been off the diet for two years now and I am very pleased to be able to say that the seizures haven’t come back – we were really scared to take him off the diet because we didn’t want to go back to the way it was before but thankfully it hasn’t.

To be honest the only thing he does to annoy me now is to kneel up in front of the television while me and mum are watching Strictly Come Dancing, just so we can play with him.

My friends can now come round which is great, well really I think Matt likes it as much as I do, he is so flirtatious it’s unbelievable; he just constantly flutters his eyelashes at them and smiles, and all my friends love him too. They say that he is so adorable which he is. At my last birthday party, they were all dancing around his wheelchair as he was rocking backwards and forwards doing his version of dancing every time the music came on! He had a great time. He is so lazy now as well. On a weekend he gets up later than me and that is saying something. He has everything done for him like, breakfast in bed, constantly playing popup toys with us and he gets to open and close mums desk draws as much as he likes while she is trying to work!

Our house has also been adapted for him, we have hoists dotted all over, a bed which goes up and down and we have built him a room downstairs. This means that there was a spare room upstairs and I got it, so now I have a bedroom and a little living room too for me and my friends to escape to. I was so happy!

This diet did change our lives, Mum was told that IF Matt lived to the age of 12 he would probably have to go into a home because we wouldn’t be able to cope with him living with us anymore but because of the ketogenic diet he is still going strong and is going to be with us for a very many years to come, all being well!

Since things have got better with Matt, our lives have got a lot better and we are able to lead a more ‘normal’ kind of life. We have even managed to get a dog now, who is nuts, so fits in with our family very well! She is a Staffie called Tallulah!

We can go out for meals in a restaurant with friends as Matthew doesn’t scream anymore and he loves being social. In fact he is great to go shopping with as he loves being wheeled around the shops and watching everyone and then going to a coffee shop for a smoothie and a panetone. He gets loads of attention too as he has a real cheeky grin! BUT that cheeky grin also means that he can get away with EVERYTHING – unlike me obviously! I love pushing his wheelchair as it now has a motor attached to it – so we do have fun together – I race him around the shopping centre, he laughs and mum shouts at us both!

Something good has come from all of this – This charity. Mum set this up because she originally asked for the diet when Matthew was two, but the Doctor said that the diet didn’t work and it was only when he was eight that 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 like he used to or say certain words like he used to, some of this is down to the brain damage and some of this is down to him having Dravet Syndrome – a syndrome that I now need to have tests for.

This is why mum set up the charity, so people don’t have to go through what we did. Since then the charity has grown and grown and we have met people who are very close to our hearts through it. One being a very special person to me called Robyn; she has also got a brother with epilepsy and her brother goes to NCYPE and he was on the diet too - so we know where each other are coming from. We have always been there for each other and I really don’t know what I would have done without her. She is like a sister to me and I feel I have been blessed to get to know her. She only lives round the corner from me so we see each other a lot, and it is good because our parents are best friends too, in fact so much so that we spend every Christmas together. That is one thing I am very grateful for from the charity.

We have also met a lot more great people through the charity, and earlier this year we all went on a MF holiday to
Butlins in Skegness, it was great fun and it felt really ‘normal’ to be able to go away as a family with our friends and because they are all with children who have epilepsy and their families are similar to ours – it didn’t matter if anyone stared at us. It was so good that we are doing it all again this year!

During the summer we get together with other MF families too, I love staying with Gail (she is mad) and this year I flew up to Scotland and stayed with Lesley and her family and had a great time.

I also went with mum and Lesley to South Africa and helped launch the charity over there – we stayed with Leigh and Vince who run MF in South Africa for mum. We had a brilliant time and it is great to be part of the charity and help mum.

I do like ‘mum and me’ time as well! Every so often mum will book some respite care and get Matt looked after and we will go out or go on holiday for a few days and it is just me and mum and I enjoy that time too.

I have learnt a lot from all of this and I have now decided what I want to be when I am older. I would love to become a paediatric neurologist, and follow in Helen Cross’s footsteps. I want to help children just like my brother and make sure that they get the best quality of life that they can with the condition that they have.

Yes living with Matthew can be hard, but when he smiles or laughs all the bad stuff blows away. We try and give my brother the best life possible, and with all that has happened I still wouldn’t want any other brother than Matthew, because I love him more than you can ever imagine!

Written by Alice Williams (aged 13)

Me and Matthew on his 13th Birthday.