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 […]
News
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 […]
Our December warrior – Kasper’s story
The day Kasper was diagnosed with infantile spasms (IS) was possibly the worst day of our lives. It seemed impossible that our little baby could be ill. He was born perfectly healthy at 1am after a normal birth, one day after his due date. We joked that his half-English side was winning over his punctual […]
Our November warrior – Luke
Luke was diagnosed with IS at 6.5mo and out of the blue the life ahead of him we thought he’d have became so uncertain. We had so many questions that can only be answered by time passing, making it all so much harder to process and move forward. Luke was diagnosed quickly thanks to video […]
October warrior – a grandparents perspective.
When I found out Sammie, our youngest daughter, was pregnant I had mixed emotions. Pure joy at the prospect of a new addition to our family but I felt a tinge of apprehension. I am sure all of our family felt this too. In 2014 our eldest daughter Manda gave birth to Ivy Florence. Ivy […]
UKIST grant helps Jaxon to swing!
We received a lovely testimonial from Emma, a member of our support group: “Just over nine months ago we were lucky enough to be awarded a grant by UKIST to fund a GoTo seat for my lovely little boy Jaxon who has battled IS/epilepsy for over 15 months now without ever really gaining control of […]
