Zack’s story is written by his mum, Libby. A stroke around the time of birth or in the first few days of life is one of the most common underlying causes of infantile spasms developing at some point in the first year. Approaching the end of a completely normal pregnancy something was suddenly not quite […]
News
BPNA conference 2024
Our UKIST chairperson Jenny Rawling represented the charity at the recent British Paediatric Neurologists Association annual conference in Bristol, together with other representatives of UKRET charities (UK rare epilepsies together – a new umbrella group to encourage cooperation between the small epilepsy charities). The conference is a great opportunity to network with some of the […]
Our January warrior Dante – a success story for the ketogenic diet
Dante was born in 2017 at 38 weeks completely healthy and he was a happy baby. When he was 11 weeks old we started to notice strange movements. At first it seemed like a regular startle reflex but then we noticed that the movements came in clusters and were far too frequent to be just […]
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 […]
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 […]
Epilepsy awareness month Fun run launches 1st November!
Tickets for our Fun Run go on sale 1st November at 6:00am! This is a virtual event that you can complete anywhere you choose. Simply purchase your ticket, complete your distance and send us a screenshot from a suitable fitness/tracking app as evidence to receive your medal. We are also hosting optional leaderboards for those […]
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 […]
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 […]
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 […]
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’ […]
