#EpilepsyandMe - Emma Williams, Founder of Matthew's Friends Story

I was giving Matthew a bath one evening when he suddenly went into his first seizure. He was just nine months old and I was absolutely terrified - I thought he was dying. The ambulance came and rushed him to the hospital and we were told it was just febrile convulsions. By the time he’d had his third seizure they said he just had a dodgy temperature gauge and he’d grow out of it by the age of five. But that’s not what happened.

An unhappy little boy

When Matthew reached around 13 months, it was like somebody flipped a switch: he started seizing all the time. I’d just fallen pregnant with my second child, Alice, and we started sort of living in the hospital - I ended up spending the majority of my pregnancy there. We were being transferred all over the place because they couldn’t control Matthew’s seizures, and this was when he was diagnosed with epilepsy. 

They said it was idiopathic epilepsy, meaning they couldn’t find a cause for it. We went through lumbar punctures, MRIs, electroencephalograms and nobody could tell us why it was happening - which is the only thing you want to know. After that, the next thing you’re asking is for them to please make it stop - surely there’s some kind of medication? We were told it’s a case of finding the right medicine - or right combination of medicines - that will put an end to the seizures. So we started down that route, and that’s when things became really difficult. Unbelievably hard, in fact.

At that point, we not only had the seizures to contend with, but also the side effects of the medication - some of which were horrendous - and at the same time I’m trying to raise my newborn daughter. I had no idea what each day was going to bring; it could go from being completely calm to being blue-lighted to the hospital in an instant, because I never knew when Matthew was going to start seizing, and these seizures could last for over an hour at a time. Matthew had gone from being a normal, happy baby into an extremely unhappy little boy, having seizures every day.

“Please, God, make the seizures stop”

I had to carry emergency medication everywhere, because he could go into a seizure in the middle of Tescos - and back then you had to administer the medication rectally, while you’d have people walking over you, rushing to get away. It was a hideous time, and you end up feeling very, very isolated, not wanting to go out, but at the same time having to be completely focused on your children. Everything else was secondary; it was all about trying to find a cure for Matthew, trying to come to terms with what had happened. We were under a huge amount of strain. My marriage broke down.

When you have a special needs child, it’s tough on the siblings as well. I felt really sorry for Alice, because there were so many times we planned on doing something, but then Matthew would have a load of seizures and we couldn’t go through with our plans. Then Alice would feel guilty because she would be so upset and disappointed that we couldn’t do something, but she knew it wasn’t Matthew’s fault. She was extremely loved, she was fed, she went to school, she grew up - but I just don’t remember the first two years of her life; it all went past in a blur. Sometimes she asks me what her first word was or something like that. I have no idea. 

For the first seven years of his life, Matthew was put on all sorts of cocktails of medications and none of them worked. We had to have a padded room in our home, he was going to special needs school, he’d scream all night and be awake all day having seizures. And he was just so violent; beating up, pinching and scratching Alice. It was thoroughly miserable. There were a couple of times when he’d come close to dying on various combinations of medicine, and I’d gone from the point of holding my son when he started having seizures and thinking, “Please God, make the seizures stop,” to holding him and thinking “Please God, take him now, because I can’t watch this any more.” The doctors told me that he would probably be dead by the age of 12 or, if not, I’d have to put him in a residential home because I wouldn’t be able to cope with him any more.

The ketogenic diet

I’d first heard about the ketogenic diet when Matthew was two years old, through Jim Abrahams’ work with the Charlie Foundation in America. I saw First Do No Harm, the film Jim which told the true story of a child called Robbie, who was cured of his epilepsy using the Ketogenic Diet, and then I started to research it myself. I raised the idea of the diet with Matthew’s doctors when he was two, but all they said was, “The diet is no good, it’s very unpalatable, it doesn’t work - we just have to keep trying to find the right combination of medicines.” But by the time Matthew was 7 years old, they were just suggesting different combinations of medication he’d already had and I was at the end of my tether. I told them I had to try the ketogenic diet because I have to tick that box - I don’t care how difficult it is, I don’t care how unpalatable it is. Nothing else has worked and we have to try everything. As it happened, there was a clinical trial just starting at Great Ormond Street Hospital. 

The trial was run by Professor Helen Cross, and she knew that we needed to prove the diet could work in order to change attitudes, so parents like me weren’t hearing “no, no, no” when we asked doctors about it.  Matthew was one of the first children to be enrolled onto the diet clinical trial. We started it at the beginning of the summer holidays, so I knew I’d be able to watch him every minute of the day, and we’d have six weeks for me to master the diet and get a sense of whether it was going to help him at all. The first week was bad; Matthew went from an ordinary diet straight to the strictest version of ketogenic diet - which was a 4:1 Classical Ketogenic Diet - and he was pretty grisly about it, because he’s always liked his big meals. I thought he’s never going to be happy with this.

On day three or four of the diet the ketones kicked in, and in the morning I couldn’t wake him up. His face was bright red, his breath was smelly. I called the nurse at Great Ormond Street and they told me to take him to our local hospital, so I thought, “here we go again.” They got him into the hospital and put him on a saline drip (they knew they couldn’t give him dextrose), then he had a big drink, woke up and he was fine. The doctors said his ketones were very high, so we lowered those by giving him some juice and then we took him home. I collapsed into bed, completely knackered, while my mum stayed up to watch him overnight.

A new beginning

I woke up the next morning not knowing what to expect, but when I saw Matthew he was just completely chilled out. My mum told me he hadn’t had any seizures in the night and I couldn’t believe it. The day after that there were no seizures again, and Matthew was as happy as anything - no screaming, no shouting, and actually able to concentrate on things. I thought, “What on earth is going on?!” We actually went out for a walk. But at the same time I wasn’t holding my breath, because I’d never expected him to be seizure free; by this point he’d had thousands of seizures and there was scarring on his brain. I’d gone in with realistic expectations, my only goal being to try and get him off some of the medication, give him a better quality of life and try to reduce the frequency of his seizures. But over the next couple of weeks, he had hardly any. There was one little seizure, about 30 seconds, and he recovered easily - straight back to being a smiley little boy. It was like he was a different person; it was incredible. 

It took me over a year to relax a bit before unpacking the bag that I kept in the hallway for emergency trips to the hospital. He was still profoundly disabled, but he was in school and doing well. He was a happy chap who was sleeping through the night, and his seizures had dropped by about 90%. For Matthew, who could have hundreds of seizures a week, that was massive. It wasn’t just Matthew who was different; life was different. I thought “I can live with this,” now that there weren’t any prolonged seizures and hospitalisations. Alice was able to start having a relationship with her brother, and we could start going out and doing things. They could sit on the settee and watch a film together, and Matthew could actually concentrate on it. They started having cuddles together, which was unheard of before. She was finally able to make plans to do things and go to after school clubs. Matthew was getting to bed at a decent time and sleeping, so Alice could stay up later and we had some one-on-one time together. Everything became a lot calmer, quieter, and just a lot happier. Everybody benefited from it.

During this whole time, I was getting myself organised with the ketogenic diet. We started out with our basic menus, and then I moved on to batching up and making my own meals. I was working with a dietitian who let me have a meal plan that she was developing, and we use that all the time now. It was great when I started making up my own recipes, because then I could look at what I had available and make Matthew’s favourite meals. The key is to be organised and to know what you can give your child and what you can’t. Once you learn that it’s quite easy, and the dietitians are there to support you. What it comes down to is weighing food, and then getting used to batch cooking so you can have all the meals prepared for the week. It takes around three months to get accustomed to it - depending on how good a cook you are - but even if you are not the greatest cook in the world, it’s nothing you can’t do without a bit of practice. Then you find what works for you and your family. So I used to try and give Matthew pretty much the same that Alice and I were having, just without the potatoes, rice, pasta and things like that, with vegetables added in instead. Sometimes Alice and I would just have a bigger version of what Matthew was having. Eventually you get used to it and it becomes part of everyday life.

A happy life

I’m pleased to say Matthew turns 28 in September 2022 - he’s still very much alive and kicking, and he’s still living with me, not in a residential home. My only wish throughout his entire life has been for him to be happy, and that much we’ve achieved; he has a great life, a great quality of life and even a better social life than I do now! He was on the ketogenic diet for six years and we have since weaned him off, but the good effects of the diet have stayed. Now he is just on a low dose of one single medication, so the diet has really reset everything for him and everything is very manageable now; he hasn’t been in hospital in a long time. He just goes out and about now, and he has a carer while I’m at work - the rest of the time he’s with me and with his family. 

Meanwhile, Alice qualified as a doctor two years ago - thrown in at the deep end, in the middle of a pandemic - and she’s doing really, really well. Professor Helen Cross was actually the person who inspired her to become a doctor, because Alice saw first-hand the difference that a good doctor who listened to her family could make. She saw the difference that Helen made in Matthew’s life and in our lives, and she told me “I want to be like her.” Everything absolutely turned around when we met her and started the diet: Matthew is happy, Alice is happy, we’re happy. 

Matthew’s Friends

In 2004 I started a charity, essentially because I was extremely angry that I had asked for the diet for years and not got it - especially as diet was the only solution that actually worked for Matthew. I knew that other families were no doubt being told the same negative things that I had been told about the diet, so we needed something like the Charlie Foundation in the UK. I knew how isolated people and families with epilepsy can be because there’s such a stigma attached to the condition and it frightens the hell out of people. I wanted the charity to be a friendship network, so I called it Matthew’s Friends, because I wanted families to feel like they weren’t alone, and I used the rainbow to symbolise inclusivity and offer a sense of hope. The thing driving me to make it happen was knowing that if I’d received ketogenic diet therapy when I’d first asked for it - when Matthew was two - I could have saved him a minimum of 74,720 seizures. I couldn’t live with that knowledge. I had to do something about it. 

Helen had been asking me to do talks for families - and even some coaching - in the years before I set up the charity, so I’ve been involved in the ketogenic diet for well over 20 years and I’d now describe it as my passion. Our work has always honed in on medical ketogenic diets, supporting those centres in the UK, and providing training and information meetings - because education and awareness has always been the biggest thing we’ve needed to get across. 

The consensus among medical experts is that if somebody fails to respond to two medications, then the ketogenic diet should at least be discussed. We support that; we are not an anti-medication charity. There are 70% of people whose epilepsy is controlled perfectly well by the medication and can live an ordinary life - that’s great. But those aren’t the families we work with; the families we’re helping are those where someone fails medication after medication, are put on a cocktail of medications and don’t have a good quality of life. So if the first two medications fail, the ketogenic diet should be discussed, along with the possible options of Vagus nerve stimulation (VNS) or surgery. But the ketogenic diet should well and truly be up there, not least because it’s fairly quick to set up and you can most likely tell within three months whether the diet is going to work or not. If it does, it’s worth investing your time in doing it - especially when you see your child getting better. 

I’ve coached thousands of different families over the years and my advice to parents who are in the situation I was in is to get support and accept help wherever you can. Don’t be proud, be kind to yourself and don't put yourself under too much strain. Having that diagnosis when you’re not expecting it is a massive shock. You will cry a lot. You will scream a lot. You will get angry. Go through those emotions, pick yourself up, dust yourself off and then keep learning, keep finding out, keep asking questions. If you’re not happy with the answers, then ask the questions again. You know your child better than anyone else does. 

Disclaimer: The views/opinions presented are solely those of the individual and do not necessarily represent those of Nutricia.