Our Founder & the Story behind Matthew’s Friends.

Emma Williams MBE

Founder – Matthew’s Friends Charity for Ketogenic Dietary Therapies.

Emma Williams MBE is the Founder of the Matthew’s Friends organisation which

incorporates international charity branches, as well as being a former Director of KetoCollege, a Ketogenic Dietary training programme for medical professionals.

Most importantly, she is mother to Matthew and Alice. Matthew has Dravet Syndrome and is the inspiration behind the charity she set up in his name back in 2004 due to his incredible response to the ketogenic diet. Her daughter Alice is now a doctor specialising in preventative metabolic medicine.

Emma worked full time in the ketogenic diet field for over 22 years.  She has supported thousands of families and presented at hundreds of conferences and meetings both nationally and internationally.  She has also written book chapters and co-authored medical papers on Ketogenic Dietary Therapies.

Emma was also part of the international team that set up INKS (International Neurological Ketogenic Society) and she served on the very first ILAE Ketogenic Dietary Task force.

She has been a global advocate for Ketogenic Dietary Therapies.

Emma retired from Matthew’s Friends in July 2023 and now lives with Matthew and her family in the West Country

Emma Says….

“I am extremely proud of the work that has been achieved by Matthew’s Friends and I look forward to seeing what the various branches will do in the future.  I achieved most of what I set out to do apart from ‘every person who wants a ketogenic diet should be able to get one’ – maybe taking on every health board in the world was a tad too ambitious – although I do now charge that specific goal to INKS!  Most of all, I loved all the families I met along the way, the new friends that have been made and the amazing success stories I was able to witness, these were truly incredible, and I feel so very honoured.  I wish everyone much love.”

The boy behind the charity – Meet Matthew Williams.
Written by Emma Williams MBE 

Matthew 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.

I first found out about the Ketogenic Diet when Matthew was about 2 years old, but when I asked Matthew’s Paediatric Neurologist about it, she said that the diet did not work, that it was unpalatable, the children were sick through it and medication was by far the better option. I believed her and did what I was told like a good patient. I carried on with the merry-go-round of different medications, but nothing seemed to stop Matthew’s seizures and if anything, they were making the situation a whole lot worse. Matthew was also assessed for brain surgery, but by this time he had so much scarring and damage to his brain because of all the seizures, that there was no way that they could carry out any kind of brain surgery that would be of any benefit to him.

The drug merry-go-round went on for nearly six years and periodically in that time, I kept on asking for the diet and kept being refused. By this time, the film ‘First Do No Harm’ had been made highlighting the Ketogenic Diet, but when I questioned the doctors, again, I was told it was ‘Hollywood hype’ and the diet really didn’t work that well and that this film did not give the details of all the terrible side effects that there were with the Ketogenic Diet and once again I was told that drugs were the best option. However, Matthew was having terrible seizures every day, between 10 and 15 tonic clonic seizures, drop attacks, absences as well as myoclonic jerks so powerful that they would knock him off his feet. The doctors said that IF he made it to the age of 12 then he would probably need to be in a residential placement as we would not be able to deal with him living at home anymore. The family fell apart and I was now a single mother of not only a severely disabled little boy but also his younger sister Alice whose life was also a complete misery as everything had to revolve around her brother.

When Matthew was 7 years old, on a yearly routine appointment with the neurologist, I insisted that I wanted the diet because basically there was nothing else left to try. It was a choice of going through the same drugs he had tried before but in different combinations and more of them OR get him onto the ketogenic diet. There was no choice as far as I was concerned. I had to tick that box and as the side effects of the medications were so awful, he was on a considerable amount of them and Matthew’s quality of life was so poor that it really could not have got any worse for any of us.

Thankfully, Professor Helen Cross had just started her trial at Great Ormond Street Hospital, so we were referred over to see the team and Matthew was accepted onto the clinical trial and within 2 weeks of starting the classical Ketogenic Diet, Matthew’s seizures had reduced by 90% and within eight months of starting the diet he was off ALL medication! His quality of life improved dramatically., He was calmer, happier, more relaxed, sleeping well and he turned into a very loving little boy. I had finally got back what was left of my son and my daughter could finally have some kind of sibling relationship with her older brother. It was a joy to watch.

The fear that I was made to feel over the side effects of the diet were also totally unfounded. Matthew was on one version or another of the diet for nearly six years and did just fine, the only reason he was kept on it for so long was because I was too scared to wean him off! During this time, we also discovered that Matthew had Dravet Syndrome, a catastrophic epilepsy syndrome. We also know now that Dravet can respond very well to ketogenic therapy and that was the treatment he had needed but been denied for so long.

At the time of writing, Matthew is approaching 29 years old and still lives at home with me and his family. He has a great quality of life and although he has not been on the diet since he was 13, the good effects of the diet have stayed with him. He is disabled, he was always going to be, but he enjoys his life and loves his family, he is happy and that is all I every wanted for him.