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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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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