Maisie's story


Maisie was a happy child and young adult and it is simply impossible to summarise, in just a few words, such a short yet fulfilled life. Maisie was just 22 when she died in her sleep through a catastrophic epileptic seizure. She was bright, kind and intelligent and characterised by her smile and her amazing hair, which always created comment when she was out.


Maisie was the middle child with brothers Tom and Freddie either side of her. The three of them had a fantastic relationship as they grew up and as this continued as they became adults.  


Maisie loved school, attending Burnham Primary, then Southend High School for girls, before moving on to The Billericay School for sixth form. She 'picked up' some lovely friends along the way who remained in her life even when their lives moved in different directions. She played football for Burnham Ramblers and also at Leeds University where she spent three happy years studying politics and developing a circle of close and loyal friends. Over the years, Maisie attended many gigs, sporting events and festivals, keeping every ticket and wristband as a permanent record of how much she packed into her short life.


By the time of her funeral we could see just how many friends she had ‘collected along’ the way with the crematorium literally bursting at the seams with people wanting to pay their respects to a young lady who was truly beautiful inside and out.


Maisie was genuinely interested and active in the Political world, vigorously sharing her opinions and picketing people in the high streets of Essex to use their votes. She was much loved by her parents who enjoyed many happy holidays with her all over the world; North East Greece being a particular favourite which will forever hold an extra special place in our hearts. Maisie was the best daughter, granddaughter, sister and niece that anyone could wish for.  She was an involved and patient Cousin spending much time with her younger cousins and socialising with the older ones.



Her epilepsy started at Leeds towards the beginning of her first year. The medical advice was that this was not unusual so and there was a 50/50 chance of it reoccurring. She had a variety of tests which showed nothing unusual. A year later she had another seizure and was put on medication and given advice about how to manage the condition; protect your sleep, avoid stress and take it easy when partying.


We learnt that epilepsy is not an exact science and diagnosis not straightforward.


After she graduated from University the frequency of the seizures increased to quarterly and then, monthly and fortnightly towards the end of her life. Maisie was being seen by a Consultant at Southend Hospital in December 2018, who changed the definition of her epilepsy slightly and recommended an EEG, which she had early in January 2019.


Tragically, Maisie died at home in her sleep, as the result of an epileptic seizure, on the 26th January whilst we were waiting for the results. These results subsequently indicated a further slight change in the diagnosis. The Consultant had advised us that there was 1:1000 chance of death through epilepsy which got our attention and Maisie made changes to her diet (eg foods that slowly release energy), began an exercise regime, religiously took her medication (setting reminders in her phone, ipad and computer) and kept a diary of what she was eating and how she was feeling.



This diary gave us an insight into how she was feeling in the weeks before her death and gave us some comfort in the knowledge that she was taking her condition seriously and doing all she could to follow seizure management advice.


For Maisie, sadly, this wasn’t enough and we are left wondering why we were left to research guidance and advice for ourselves rather than this being proactively offered by the medical profession and why the first time that most people hear about the reality of SUDEP, is when they have lost a loved one.


Maisie is missed desperately by everyone who knew her. Her family is trying to find a way forward with our lives and to come to terms with the hole left by the loss of our beautiful, happy, kind and loving girl.  Her friends are having to learn, far too young, how to deal with the grief of losing a lively, challenging and fun loving friend.


All of us know that Maisie enriched our lives in so many ways and we are determined to ensure that through her loss, positive changes will happen. The Maisie Tothill Foundation has been set up in her memory by her family who are ‘Determined to Make a Difference’ to the lives of young people and their families by continuing to promote the causes that were so important to Maisie.