Millie was born 9th September 2021, around Christmas/January time we noticed that she wasn’t using her right arm half as much as her left. After numerous doctor visits we were referred to a paediatrician. However, in March I noticed she was doing some unusual movements, a bit like she was being made to jump and […]
News
Our April ‘fair warrior’ Finley
We chose the name Finley as it means ‘fair warrior’ and he has certainly lived up to that name. From day one Fin has kept us on our toes! He was born quite poorly and had a seizure within hours of being born. Initially they thought he had been starved of oxygen at birth and […]
Outnumbered and The Realisation
Many of our members really related to the poem ‘Outnumbered’ by Becky Hemsley (shared here with her permission) which speaks about the experience of having a child with special needs and being made to feel they don’t measure up. More Becky Hemsley poetry The second poem was written by a member of our support group […]
UKIST 2024 Annual update
Dear Supporters, Partners, and Friends, We are thrilled to share with you the impact made by the UK Infantile Spasms Trust in the past year. Your unwavering support has been the driving force behind our success, and we are excited to highlight the positive impact we’ve had on the lives of families affected by infantile […]
World Down Syndrome Day – meet Reuben
Today is World Down Syndrome Day and also UKIST’s 7th birthday and to help celebrate I’m very honoured to be sharing my story about my beautiful boy Reuben. Reuben was born in January 2019 and came into the world rocking an extra chromosome. I knew in pregnancy that there was a 1 in 14 chance […]
Our March warrior Isaac
Isaac was born in July 2022 after a pretty smooth sailing pregnancy (although in the middle of a heatwave!) He was a happy baby who was an amazing sleeper In January 2023, I noticed some strange movements when Isaac woke from a nap. After being dismissed by the GP who told me “it is not […]
Medical education – don’t forget the bubbles
UKIST are very grateful to Dr Alice Goldhill, a GP partner and one of our trustees, for contributing a medical education segment to the paediatric education site ‘Don’t forget the Bubbles’ to help educate other doctors on infantile spasms. The piece can be found here Infantile Spasms – Don’t Forget the Bubbles (dontforgetthebubbles.com) Alice is […]
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 […]
