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 […]

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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 […]

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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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