Our May warrior Millie

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 […]

Read More…

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 […]

Read More…

ukist 2024 newletter

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 […]

Read More…

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 […]

Read More…

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 […]

Read More…

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 […]

Read More…

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 […]

Read More…

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 […]

Read More…

Top