Eliza’s seizures started when she was 5 months old. I kept video recordings on my phone and showed them to our local GP , we were initially told it was ‘typical baby behaviour’ until I pushed my concerns that it could be Infantile Spasms. That evening we got a call and told to go through […]
News
Our August warrior – Tia
Our August warrior is Tia, whose story has been written by her mum Chloe Tia started displaying “strange” movements around October 2019 when she was 3 months old. We took her up to the local A&E where they said it was reflux. I knew something wasn’t quite right and kept taking her back numerous […]
July warrior – lovely Lola.
Our UKIST warrior for July is Lola, her story is told by her mum, Lisa. On 8th May 2020 we were joining in our our street party for VE day and Lola at 7 months old was not settling to sleep, which was unusual as she loved her sleep. We noticed as she was finally […]
UKIST AGM 2021
Our fifth UKIST AGM was held on Sunday 25th April 2021, via Zoom. The Trustees are delighted to report that the charity continues to grow – providing much needed support and guidance to families affected by infantile spasms. We’re also making huge strides towards increasing awareness among primary healthcare communities, and we continue to fund […]
UKIST member’s new website recommends books for children with visual impairment
UKIST would like to congratulate support group member Catherine Keeling who has set up a new book review website for children with corticovisual impairments (but likely relevant to all children with a VI). www.cvibooks.org ‘When my son was newly diagnosed with his CVI, I did lots of Google searching to try and find suitable books […]
June warrior – Madeline – diagnosed in a pandemic
My little girl Madeline was diagnosed with IS at seven months old. I had noticed some strange movements one Thursday evening during dinner. At first I thought she just didn’t enjoy my cooking! But when they happened again over the weekend I was concerned and went to A&E first thing Sunday morning after ringing 111. […]
Youtube video on the genomics of epilepsy
Dr Charles Steward from Congenica has presented a fascinating session for HOPE epilepsy on the genomics of epilepsy, which is now available to view on Youtube. https://www.youtube.com/watch?v=gC9EU23VABA […]
Our May warrior – Henry
In October 2020 we noticed our son Henry doing a strange new head movement where it looked like his eyes rolled back. We called the doctor who initially wasn’t too worried and it was only due to the persistence of my wife that we were granted a hospital referral. We spoke to a doctor working […]
Our April warrior – Jack
Jack was born a healthy, happy baby by a planned C-section just under 40 weeks. Everything was fine, we got out of hospital the next day and started our new journey as a family of four. On day 2 we noticed Jack having little jerks lasting just moments, by the early hours of day 3 […]
Genomics England article about the history and the future of West Syndrome (infantile spasms)
Dr Charles Steward, a parent of a child with infantile spasms, has written this fascinating article about the history and the new developments surrounding West Syndrome. https://www.genomicsengland.co.uk/rare-disease-day-2021-blog-west-syndrome/ […]
