The BEE (brain development in early epilepsy) project

The Brain development in Early Epilepsy (BEE) study aims to track the development of babies with epilepsy. The study is funded by an Epilepsy Research UK and Autistica fellowship, and will be co-sponsored by King’s College London and Guy’s and St Thomas’ NHS Foundation Trust. UKIST members were involved in focus groups in the early […]

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Our December warrior Caleb

Caleb’s story is written by his mum Adela. A small proportion of  children with infantile spasms later develop Lennox-Gastaut Syndrome – characterised by multiple seizure types and characteristic EEG abnormalities. Seizures in LGS are often difficult to treat. Caleb’s story illustrates the difficulties families with drug resistant epilepsy are still having accessing medical cannabis, despite […]

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Our November warrior Ivy-Rose

 Ivy-Rose’s story is written by her mum Kylie   My beautiful Ivy-Rose was born November 2021. Pregnancy was fine until told I had polyhydramnios and couldn’t go into labour naturally so had to be induced at 38 weeks. Having two previous pregnancies with natural births I was a little nervous. I ended up with covid […]

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Our fabulous fundraisers!

UKIST are constantly humbled by the generosity of the wonderful people who have had some contact with the charity and then volunteer to raise funds for us. We’ve had a busy couple of months with multiple events taking place so we’d like to thank….   Jake and Stuart who attempted the gruelling South Coast 100km […]

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Helping our pre-verbal children to communicate

Many children struggle with developing speech and communication after an infantile spasms diagnosis so UKIST directs some of our resources to support parents in this area – we have a rolling speech and language course with free access for all support group members and we have been running small group sessions to introduce parents to […]

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Our October warrior – Cerys

This is Cerys and this is her story, written by mum Delyth. Cerys was born in March 2012 at 39 weeks after a very straightforward pregnancy and uncomplicated birth. Due to other conditions I suffered with in the past she was our miracle baby. I often think back to those first few months of Cerys’ […]

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Back to school … part 2

Ella is 4 years old now and just starting mainstream foundation. She was diagnosed with infantile spasms at 16 weeks and then Aicardi syndrome when she was 2 years old. She has had a rocky few years since diagnosis and still battles seizures most days but is always smiling and happy. She is so pleased […]

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Back to school….

September is an exciting (and anxious) time of year for many of our families as their children start a new school or nursery or move to the next step. This feels like a milestone for all families but particularly for children who have faced such huge challenges in their early years. This September we will […]

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Our August warrior – sunshine boy Leo!

Leonardo was born in May 2021. Leo arrived two weeks early and was a very healthy size at birth. Everything seemed great with his development and he seemed to hit milestones early. Around the October time Leo started to change a little. He started to get very irritable and in the evening would spend a […]

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