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 […]

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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 […]

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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 […]

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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. […]

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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 […]

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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 […]

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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 […]

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