The UKIST team are a group of mothers 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, the UK Infantile Spasms Trust, was established in 2017.
Belen Sullivan Robbins, Samia Sanders ,Jenny Rawling, Lisa Martin, Amy Melillo, Jade Bamber, Bex Gray Burns and Katie McHale .
UKIST Support coordinator
Samia and Jorgie
I’m Samia and this here is Jorgie ( and Poppy 😃) Jorgie was diagnosed at 6 months with Infantile Spasms and we fought for a 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. For the last few years I have 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,left untreated or misdiagnosed it can cause lifelong damage ) and 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 now raise money to make that support and awareness even better 💜
Amy and Maia
I’m Amy, Mum of 3 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 6 long weeks and it broke my heart. The relief when she ‘came back’ to me was immense.
Maia is happily seizure free at 21 months and her development is on track and advanced in most areas. 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 be a part of an incredible team. 💜💜💜
Jenny and Faith
Hi everyone. I’m Jenny, mum to two boys and my daughter Faith, who was diagnosed with infantile spasms at 7 months old in January 2015. 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 (seen at peak steroid in the picture top right) and has now been seizure free for two years. She lost about 6 months worth of skills to the combination of IS and 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 be setting up this charity with some of the wonderful people we have met on this journey.
Belen and Bella
Hi ya – I’m Belen and this is Bella! Myself and husband live in Bournemouth with our 3 girls (Bella has one older sister and one younger)
Bella was diagnosed in May 2016 at 6 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 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 really is infectious.
A year ago I had never heard of Infantile Spasms or the devastating effects the condition can have, 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 x
Lisa and Benji
Hi all I’m Lisa and this is my warrior Benji!
He was first diagnosed with IS at 4 and 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 3days 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 clonezapam. He is exactly where he should be development wise in fact slightly ahead in most aspects except his speech is slightly behind. He is crazy, funny little boy and always smiles. He just needs to work on being able to sleep! He will be 1 on wear purple day and I cannot wait for our years of fun we have ahead xx
Jade and Olivia
Hi I’m Jade and this is Olivia, who’s just celebrated her 1st birthday. She was diagnosed at 8 months. 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. Olivia’s last seizure was on Christmas day 2016 so we are doing really well so far. Before the spasms Olivia was delayed with her development and since then the doctors have found a very large duplication in a chromosome that would explain all her difficulties. She tries her very hardest in her physio and Portage sessions and is making improvements (slowly but surely) she is a very happy girly who loves a cuddle ☺😍 she also has the best big sister ever Danni and she will become a big sister herself this summer 💖
Bex and Luna
Hello everyone, I’m Bex and I’m the proud mummy of Luna. She was diagnosed in September 2016 at 4 months, but she was having Seizures from as early as 8 weeks old. Unfortunately it was misdiagnosed as Startle Reflex a number of times. Luna had a successful course of Prednisolone and has been seizure free since November 2016.
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.
Katie and Lucas
Hello everyone! I’m Katie, I’m 22 and from Leeds UK. My son Lucas was 5 months old when we were diagnosed with infantile spasms. It took 3 doctors appointments, 2 A&E trips and one ambulance ride to eventually get that EEG and to get Lucas diagnosed. He was started on Vigabatrin straight away. The IS took around 3 months to stop, what I didn’t realise at the time is that Lucas was having a different type of seizure too, called Atonic Seizures. Only since his IS stopped did I realise this, and he is now controlling them with medication. Lucas regressed back to newborn after diagnosis but has recently been assessed and is exactly where he needs to be. He is enjoying nursery, and absolutely thrives from life. I also have a 1 year old daughter who is the driving force behind him, she keeps him and us going. 💜I look forward to meeting you all x
Clare and Jenson
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 GP’s & 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 seen 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 !