The UK Infantile Spasms Trust (UKIST) was established in 2017, and provides vital support to families with children affected by the rare seizure disorder infantile spasms (IS), also known as West syndrome.
The charity offers a lifeline to anxious parents via its online community, and works alongside medical professionals to raise awareness of this little known condition.
Children diagnosed with IS will typically endure a barrage of tests and treatment before they are even one year old. That’s why at UKIST, we call them warriors – and we believe that every warrior deserves an army behind them.
If you're worried about infantile spasms, or suspect your child may be experiencing IS seizures, try to capture them on film and go to your nearest children’s A&E department. For less urgent advice and support, you can also find help through our Facebook support group – you’ll just need to complete a few details about yourself and submit a request to join.
Our charity’s aims:
Educate
We’re working to improve awareness of the symptoms of infantile spasms amongst the medical profession and the public - because early diagnosis is key.
Support
We provide a vital network of support to parents and carers with children affected by infantile spasms - with several online communities and a grant scheme.
Research
The more we know, the more we can do, so we’re also supporting the advancement of clinical research into infantile spasms - our news has more on research that UKIST has funded.
Meet the team
The UKIST team are a group of parents who found each other online. Out of frustration at a lack of UK-specific information and support, and a desire to help others in the same boat, a registered charity was born. Find out more about our trustees and support team below:
Our Trustees
I’m Samia, I live in Somerset with my husband Steve and three daughters, Evie, Poppy and Jorgie. Jorgie was diagnosed at six months with infantile spasms and we fought for a very long time to get seizure control.
We were very lucky to have been part of MAISEY which is multi agency support and had access to Portage, Physio, and SALT to help get Jorgie heading in the right direction. She is working really hard at catching up with her peers, she is very cheeky and lights up the lives of all around her.
When Jorgie was first diagnosed I raised money tirelessly for Epilepsy Research because there was no infantile spasms charity available (and I moaned about this year in and year out, because IS is not just epilepsy, when left untreated or misdiagnosed it can cause lifelong damage).
Out of joint frustrations with other parents in IS forums, the idea of having our own was born and here we are today, in a position to now not only help and support parents in our group but to raise money to make that support and awareness even better. In our first year we have been able to raise enough money to support families through grants for equipment where they really need it - it is one of the proudest things I have ever achieved. I love each and every one of our UKIST family.
Hi everyone. I’m Jenny, mum to two boys and my daughter Faith, who was diagnosed with infantile spasms in January 2015 when she was seven months old. We were very fortunate to have doctors within our family circle who recognised what was happening in our video footage of Faith’s spasms and advised us to take her straight to A&E. Our local hospital is Bristol Royal Hospital for Children who have been part of the two big recent studies of IS (UKISS and ICISS) and who gave us excellent care. Faith responded well to treatment with high dose steroids. She lost about six months worth of skills to the combination of IS and the tough treatment, but has since made great progress with the help of Little Treasures, Portage, Rainbows and Snowdrop for Brain Injured Children.
Despite extensive testing, no underlying cause has been found for her IS. My family were absolutely devastated when she was diagnosed and the prognosis was bleak, and at the time there was no specific support for Infantile Spasms in the UK. We found the international IS groups on Facebook were a lifeline and through them met some other affected British families. We are so excited to have set up this charity with some of the wonderful people we have met on this journey.
I’m Michelle, and this is my family - Chris, Eleanor and Edward.
In March 2016, at around 5 months of age, Edward started to do 'jumps'. This quickly became a pattern of un-natural movements, he was not reaching or grabbing at toys, and at times he was oblivious to what was going on around him. We knew something was very wrong.
Three local GPs reviewed video footage of Edward’s, but they could not tell us what it was; in fact, one GP said it was “normal childhood behaviour”. At 7 months of age Edward was thankfully referred to a paediatric neurologist in York and diagnosed with West Syndrome. A combination of Prednisolone and Vigabatrin (Sabril) stopped the spasms within 24 hours, and no cause has been found. Today, Edward is a very happy boy who enjoys playing with his friends at nursery, swimming, and rugby.
As a family, we’re extremely passionate about raising awareness of Infantile Spasms, with the hope that children can get quicker diagnosis and treatment. We’re also committed to raising funds for UKIST, to support affected families and progress research in this field. Most recently Chris has climbed Kilimanjaro, and I’m honoured to take up the role of Trustee and Treasurer for UKIST.
Hi, I’m Louisa - our middle daughter Georgia was diagnosed with infantile spasms in 2015. At five months she started with subtle little movements that built in intensity and number alongside this she was more clingy and subdued. After finding some videos on YouTube of babies having infantile spasms we immediately knew it was that and took her to the out of hours GP who although he acknowledged he hadn’t heard of it had us admitted to paediatrics. After a couple of days she had an EEG and was diagnosed. Vigabatrin initially stopped her seizures but they returned after a couple of weeks and prednisolone was added they stopped within one dose. Those were the darkest days, no smiles, incessant hunger, and insomnia. The loneliness and grief was overwhelming, I searched online for support and found little available and whatever I read painted a bleak picture. With the help of Portage, Georgia slowly made development gains and at some point in the subsequent years life started to feel a little more normal. I found the UKIST Facebook page and had a determination to support others affected by this rare condition.
Georgia is five now and loving school, miraculously she has no developmental delays. I am determined that positives will evolve from our experience and I want to improve the journey for families affected by IS, using my connections with the medical profession to improve awareness and ultimately prognosis for our children.
I’m Alice and this is Daisy. I am married to Herms and we have two older children (Arthur and Matilda).
Daisy was born in October 2018 and completed our family perfectly. She was a gorgeous happy baby who was developing well. However in April 2019 at around 6 months we noticed some subtle changes in behaviour – she appeared more subdued, slept more, and her development seemed to plateau. Within a few weeks things developed further when she woke one day from her nap and made some strange movements. My husband was there and had the presence of mind to film her. We watched it back and I knew immediately that something was very wrong. Amazingly, I had seen an awareness video about Infantile Spasms a few months earlier through a friends Facebook page and it had stuck in my mind. I knew we had to take her straight to A+E.
We were incredibly lucky-our local hospital immediately knew what was happening and Daisy had an EEG that day which showed complete hypsarrhythmia. A diagnosis of West Syndrome was quickly made and she was commenced on Vigabatrin and Prednisolone. Whilst in hospital we researched Infantile Spasms and our world just fell apart. We had no idea what Daisy’s future would hold and how we would cope as a family. It was in that heart-breaking time that I first came across UKIST and there found boundless hope and support.
I feel extremely privileged to now join UKIST as a Trustee. I am passionate about helping to raise awareness about Infantile Spasms, aid research further into this condition, and to help support those who are affected.
I'm Amy and this is Noah. Noah was diagnosed with IS at 6 months old after 5 months of spasms being dismissed by various medical professionals as reflux, colic, cows milk protein allergy and hiccups! I had to fight extremely hard to get him the help he needed after being repeatedly dismissed as an 'over anxious, first time Mum'. Noah is now 2.5 years old, and despite our traumatic first 18 month we are both enjoying life. He makes me proud every single day.
This journey has been incredibly tough and has lead me to ask lots of self challenging questions about my perception of disability. Before I viewed disability through a lens of deficit, loss and pity, but Noah and the other IS warriors I have met on this journey have taught me that the reality couldn't be further from my preconceptions. I'm so proud how far we have both come and how much growth has come from that initial trauma. Noah is still delayed and still has some seizures. We don't know what the future holds, but he is continually showing us what he is capable of and is learning more everyday. He is the love of my life.
I’m Louise and this is George.
George was born in October 2019 and at around 6 months old, he started becoming irritable and upset everyday. He also became increasingly drowsy, fussy and no longer able to hold his rattle. His irritability was put down to colic and silent reflux.
Over the next couple of weeks, George started having episodes where his eyes would roll upwards and his arms would move outwards for a second at a time. The episodes started increasing in frequency and that’s when we knew something was definitely wrong.
I called 111 and explained that after googling, I felt my baby was having infantile spasms and needed to be seen urgently. At the hospital, a junior doctor said that we were being ‘over-anxious parents’ and that the movements were ‘reflux.’ We were then discharged.
Over the weekend, the spasms got much worse and I contacted a doctor we had seen privately earlier that year. He got us back into hospital and arranged an EEG which showed hypsarrhythmia and the diagnosis of Infantile spasms/West Syndrome was made. George started immediate treatment of Vigabatrin with Prednisolone and the spasms stopped within 48 hours. No cause has ever been found.
It was a truly terrifying time to suddenly be facing so many unknowns for George’s future and the grief and anxiety was overwhelming. It was at this time I found the UKIST support group who offered us reassurance and hope.
Today, George is a very happy boy who loves trains, animals and going to nursery. We’re so proud of how much he has overcome and progressed since the diagnosis. Having made it through this terrible time, I am determined to help other families in the same way that UKIST helped us and also raise awareness of this condition. I feel very proud and honoured to take up the role of trustee for this incredible charity.
Hi, my name is Sue, my granddaughter was diagnosed with infantile spasms in February 2020 when she was five months old.
My daughter, Sam, her partner, Cam and Layla live in New Zealand, and my husband and I were visiting at the time of diagnosis. One of my biggest memories from that time was watching Layla have 'tonic clonic' episodes and watching Sam, who was not clinically trained, administer rescue medication so splendidly.
I remember travelling home to England and feeling helpless. I decided I would see what was available in terms of support and came across the UKIST website. I cannot express how much UKIST helped in terms of support and friendly messages with lots of guidance, everyone understood and that enabled me to read, have confidence and send my daughter information like links to research documents, therapy tutorials, information etc.
Just having the support and understanding of other families who knew exactly what the IS journey was like was priceless, and I still feel the same about UKIST today. I decided to volunteer in 2022 and offer my help in any way I could, either by using my finance and operational skills or even by raising awareness of the charity or supporting other wider family members. UKIST is on the cusp of setting up an additional support group for wider family members.
I always say that I can never know how it feels as a parent, but I do know how it feels watching my family manage this condition and I do know all that the IS legacy and treatment means for Layla. I also know that I am incredibly proud of Sam, Cam and Layla. I have learnt so much from them, living with a terrible condition with lots of love for each other. I am in awe of their coping strategies, don't get me wrong, there are terrible days, but when Layla smiles, it feels like we have the world.
Hello my name is Chloe and this is Tia.
Tia was born in July 2019. At 3 months old she started with some unusual movements and we took her to A&E on numerous occasions, only to be told it was reflux/cows milk allergy. When she was 6 months old she regressed and this is when we got the confirmed diagnosis of Infantile Spasms. Unfortunately her spasms never stopped and a year later her EEG confirmed she now had severe complex epilepsy and was having hundreds of seizures every single day. Tia's development hadn’t progressed and she had failed numerous medications.
I heard about the ketogenic diet and asked if Tia was a suitable candidate. In November 2021, we got rushed to a bigger hospital to start the keto diet as an inpatient as her seizures were worse than ever. We stayed there for 6 weeks. By the time we left hospital there was an 80% reduction in Tia’s seizures. In December 2021, Tia had her first seizure free day and she's not had a seizure since. Due to her seizures stopping Tia has learnt how to control her head, sit, crawl, weight bear, grasp, communicate (in her own way) and has just been given a walker which she’s already taking steps in.
We are even weaning her off her epilepsy medications. Although Tia still has many challenges ahead of her I am so proud of how far she's come! My way of coping with things is to try and help people who are going through a similar journey and to raise as much awareness as I can.
I’m Kelly, mum to Naomi who was diagnosed with focal epilepsy when she was three weeks old in November 2018, and infantile spasms a further three weeks later at just six weeks old. Naomi’s diagnosis and start of treatment happened relatively swiftly once we could get seen by a paediatrician. However, there was an initial hurdle of being taken seriously by A&E staff first.
When she was four months old we moved to South Wales and have been under the care of Paediatrics and Neurology from both the University Hospital of Wales (Cardiff) and Glangwili Hospital (Carmarthen). Our local authority provides physiotherapy and occupational therapy services with brilliant access to equipment. Naomi has tried a range of medications in attempts to stop her IS but regrettably nothing had an effect until she began the Ketogenic Diet, under supervision from Cardiff Hospital. Fortunately the majority of her focal seizures are held at bay by daily medication. A personal goal of mine is to work with UKIST to ensure that A&E staff nationwide are aware of IS symptoms and the importance of prompt admission to paediatrics.
Core team members
Friends and Founders
Hi ya – I’m Belen and this is Bella! My husband and I live in Bournemouth with our three girls (Bella has one older sister and one younger) Bella was diagnosed with infantile spasms in May 2016 at six months old. We were very lucky in terms of diagnosis – as soon as the first cluster of spasms hit, we were in A&E, the consultant on duty saw the video we had taken on our phone and instantly recognised the condition. An emergency EEG confirmed the worst, but within 24 hours we were on steroids and a further 24 hours later, the spasm clusters had stopped. Bella didn’t have any relapse and so far, no further seizure types. We’re still quite behind in gross motor skills and speech, but she works really hard every day and has the most amazing character – people can’t help but love her, she has such an infectious personality. There was a time when I had never heard of infantile spasms or the devastating effects the condition can have. But however awful it is, the journey we have come on has led us to meeting these other amazing families and to where we are today, with this fantastic new charity! I can only hope something good comes out of something so awful – we still don’t know what the future holds for little Bella but for now we’re looking forward to raising awareness, offering support and helping fund research for this often misdiagnosed condition.
I’m Amy, mum of three and my youngest, Maia, was diagnosed with Infantile Spasms at 5 months old. Her development was on track prior to the onset of the seizures but she regressed to a newborn state very quickly. She stopped fixing and following with her eyes and lost the ability to roll. We treated her with Prednisolone (steroid) and Vigabatrin (Sabril – an AED) and luckily got control within about 3weeks, after a few relapses and needing to max out the dosage on both medications.
Whilst in hospital, it was very clear how little information was available to parents and how rare the condition is, judging by the amount of medical staff who had never seen it before. We were lucky to have a brilliant neurologist and epilepsy nurse who kept a close eye on her throughout.
On steroids, Maia didn’t smile or babble for six long weeks and it broke my heart. The relief when she ‘came back’ to me was immense.
We are very lucky and my biggest wish is to be able to give back by supporting other families through the process. I’m so proud to have been a part of founding this charity.
Hi all I’m Lisa and this is my warrior Benji!
He was first diagnosed with IS at four and a half months old. We noticed some off movements on the Sunday and after being told he had fatigue by our GP on the Monday we took him straight to A&E where he was diagnosed just a week later. He was put on prednisolone which seemed to work, stopping the spasms around three days of being on them. Only for them to return a month later with vengeance. So he had another course of prednisolone which worked very quickly. His EEG is still showing signs of other types of epilepsy and before Christmas he was showing signs of relapsing again so was put on vigabatrin.
He’s currently on vigabatrin, sodium valproate and clonazepam. He is exactly where he should be development wise, in fact slightly ahead in most aspects except his speech is slightly behind. He is a crazy, funny little boy and always smiles. He just needs to work on being able to sleep! I cannot wait for our years of fun we have ahead xx
Hi, I'm Jade and this is Olivia.
Olivia was diagnosed with infantile spasms at eight months old. We were very lucky that doctors at my local hospital recognised the spasms for what they were straight away and she was diagnosed and on treatment within a couple of days.
It took around six weeks to get the spasms under control so in those six weeks she was having around a hundred or more little seizures a day - little seizures with big consequences. Olivia has also since been diagnosed with a very rare chromosome disorder that is known as a 'Partial Trisomy 18’.
Today, Olivia has a severe global developmental delay which means she’s delayed in all areas and aspects. She can't walk, talk or communicate in any way. Obviously, there is no way of knowing if Olivia's delays are linked to her chromosome duplication or the damaging affects the spasms had.
She has recently started making more noises – in speech and language terms they are 'throat noises' and not many are the official noises they are looking for, but we are learning to recognise if they are happy or sad noises, as Olivia rarely expresses herself through a cry... she doesn't react appropriately to pain, even with things like injections.
However, Olivia is an absolute ray of sunshine… she can make anyone smile and melt their hearts. People definitely have a soft spot for her. Everyone adores her and her beautiful smile and crazy hair.
Olivia's two sisters are her best friends and at the ages of 7 and 16 months they help her in so many ways and it’s lovely to see them all together.
Only just this week Olivia has learnt to sit herself up - something we have been working towards in physio for a long time – although she’s not too stable sitting on her own just yet.
The doctors didn't give a great prognosis for Olivia's future when she was first diagnosed, but what one doctor did say was to just forget all expectations of her and her future and just enjoy her for who she is. At the time I thought no, no, she will be fine, she will catch up in no time. But I have learnt to just take the days as they come. I encourage Olivia and I do her physio exercises everyday but I don't think, "Why isn't she doing this yet!" I just think, "I can't wait for the day she does this and how amazing it will feel that our hard work shows"
Hello everyone, I’m Bex and I’m the proud mummy of Luna. She was diagnosed in September 2016 at four months, but she was having seizures from as early as eight weeks old. Unfortunately it was misdiagnosed as Startle Reflex a number of times. Luna had a successful course of Prednisolone.
Since her diagnosis, as a family we have had an amazing amount of support both medically and personally and finding the IS support group gave us so much hope and knowledge and continues to do so.
Luna is now on track with her development after some slight regression prior to diagnosis and treatment, but there is hope for us all. I’m so proud to be part of an incredible team and to meet people who are as passionate about raising awareness of IS, so that families in the future won’t feel so alone. I am a founder trustee 2017-2019 and remain active within UKIST as a regional parent ambassador.
Hi. I’m Clare and this is me and my little warrior Jenson. Jenson is 19 months and my youngest fourth child and we live in Manchester. Jenson was diagnosed with Infantile Spasms at 5.5 months. I’d been back and forth to GPs & health visitors for over two months questioning his “strange movements” during this time any skills he had learnt he had lost. It was when he regressed that it made me sit up and realise something wasn’t right and I took him to A&E. We was diagnosed after an EEG and started medication (prednisone) the very next day. I saw a huge improvement in him almost immediately, to see my son smile again for the first time in what felt like months was overwhelming. After a blurry week in hospital of tests, poking and prodding, firing questions and gaining no answers, it finally hit me what was happening to my boy and I was lost. I felt so alone and scared. I looked for help and came across an international support group where I met these incredible ladies who all gave me hope, support, advice and lifted me from that dark place. I felt incredibly grateful that these women were giving me their time and support to help me. I knew then I wanted to help others in the future. I’m beyond proud to be apart of such an amazing cause with these ladies. Jenson is delayed in all areas, but is catching up quickly. He’s my hero!Imogen was born in 2012 at 30 weeks, and spent her first month on intensive care. When the time finally came to leave the hospital, we were relieved and felt incredibly lucky to be taking home a healthy baby, despite her premature entry into the world. But when she was around six months old, we noticed she had stopped laughing and taking an interest in her surroundings. We knew something was very wrong when she started making strange movements, so we took her to A&E, where we were told that she had West Syndrome. Imogen was entered into the International Collaborative Infantile Spasms Study (ICISS), which used both prednisolone and vigabatrin that successfully stopped her seizures after 24 hours. However, she was subsequently diagnosed with cerebral palsy.
We were excited but understandably nervous when, 5 years later, we found out my wife was pregnant again. Imogen’s brother Jasper was born at 28 weeks. After two months on intensive care, we were given the devastating news that he had suffered severe brain damage during birth. He has since been diagnosed with severe cerebral palsy. Neither of my children can stand, let alone walk and they have limited or no speech. My children have been entered into various genome studies, including the 100,000 Genomes Project, to help look for answers to their challenges. I am sure many of you will have heard of this project and some of you may even be enrolled in it! So far we have not had any genomic diagnosis, although we continue to look! I am also a genome scientist and currently work for Congenica, a company on the Wellcome Genome Campus, that is investigating the genetic causes of rare diseases such as West syndrome, so I am able to use my career to pursue my passion to discovering answers to why severe epilepsies occur and in time, finding therapies that can treat them.
I sit on the International Cerebral Palsy Genome Consortium Governance Council, where I advise on genomic technologies and also give input from the patient perspective. I am also the patron of HOPE London, a charity that supports families who have children with severe epilepsies. I am delighted to join UKIST as a friend and hope that I can support this amazing charity in any way that I am able to, whether that’s by raising awareness of the charity and infantile spasms or by advising on areas of research that UKIST can support. I hope that I can meet some of you in person in the near future!
UKIST is part of something bigger!
In September 2018, UKIST became an official partner in the Infantile Spasms Action Network (ISAN).
The Infantile Spasms Action Network (ISAN) is a collaborative network of over 25 international charities and organisations dedicated to raising awareness for infantile spasms.
The network was convened by US charity the Child Neurology Foundation (CNF) in response to a need to improve awareness of the symptoms and impact of infantile spasms. Its activities centre around Infantile Spasms Awareness Week, which takes place every year from 1-7 December.
The network's origins date back to 2015, when the CNF partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year awareness and education initiative. In 2016, CNF convened two forums that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise IS awareness, and today, the Infantile Spasms Action Network was born.
Get in touch
If you’re worried about Infantile Spasms or are looking for support and a friendly ear, get in touch via our contact page – we’re here to help
