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 […]
News
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/ […]
Our March warrior – Myles
Hi I’m Nicole and my fiancé is Josh. Myles is our first baby together, he was first diagnosed with epilepsy when he was a week old, but we thought this was under control until he was around three months old when we noticed he was doing movements we hadn’t seen before. We took him to […]
February warrior – Seren
This month’s warrior is Seren – her mother Cat shares their progress as they have reached the milestone of four years after her diagnosis. We’d like to extend a big thank you to Cat and to others like her who remain in our support group years after their diagnosis to offer support to other families. […]
January warrior – Rachel’s story – three years on
Our daughter Rachel is now 3 ½ years old, and on January 3rd 2021 it will be 3 years to the day since, as a 6 month old, we noticed her starting to do very odd head movements. The 3rd January 2018 was the first day the schools were back, but our 5 year old […]
Infantile Spasms Awareness Week 1-7th December 2020
Pssst… did you know that ‘Infantile Spasms Awareness Week 2020’ starts on Tuesday? UKIST are proud to be an official partner of the Infantile Spasms Action Network (ISAN), and with 32 other international charities and organisations, we’ll be raising much-needed awareness to ‘STOP’ infantile spasms and improve the lives of thousands of children. Over the […]
