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:
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:
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.
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 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.
Regional Parent Ambassadors
Hi I'm Adrian, I live in Nottinghamshire with my partner Sarah and our three boys Kieran, Jake and Tristan. Tristan was diagnosed with West syndrome at 10 months old after a lengthy process. Since then Tristan has gone on to develop other conditions including dystonia. Tristan no longer has infantile spasms but sadly he now suffers with a range of different seizures. We also have a child in our household (Kieran) who has ADHD and Autism and this can help me relate to parents going though diagnosis of these conditions as well. We found UKIST whilst trying to find a diagnosis and came across the awareness video and this pushed us to take Tristan to A&E. We joined the support group and quickly found just how much of a great community it is. I have now joined the charity as joint regional support coordinator.
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.
Friends and Founders
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.
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