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News
Our May warrior Jonah
Our warrior post for May is written by Jonah’s mum, Katie. Jonah was born on 30th July 2023, weighing a healthy 10lb 3oz. He was our happy, content little boy, coming home to meet his big sister Isla who absolutely idolised him from the very start. On Christmas Day 2023, Jonah’s first Christmas, our world […]
Our March warrior – Albie the lion heart
Albie’s story has been written by his mum Jodie Albie was diagnosed with infantile spasms in September 2024 after months of me telling anyone who would listen that something wasn’t right. I can’t even properly explain it, I just knew. As a mum you trust your instincts, and mine were screaming at me that […]
EPIC research project update
UKIST are a partner in the EPIC project (enabling early and equitable diagnosis of epilepsy in infants in the community) based at Edinburgh University. The first phase of the project – a survey of families with a child under 2 years of age with recent experience of EEG testing – is now ready to launch, […]
The BEE study update
UKIST are delighted to be a partner on the BEE study (Brain development in early epilepsy) which has just published an end of phase update. The team at King’s College have now secured a larger grant to continue the project into the preschool phase and UKIST are partnering with them again by allocating our research […]
Our February warrior Alfie – ALG13
I had a healthy pregnancy, Alfie was born at home 6 days overdue. On day 3 Alfie developed umbilical sepsis and was not responding to treatment. He got transferred to Birmingham for surgery then he started to recover. In this time we become aware of two holes in Alfie’s heart. I noticed strange movements when […]
Our January warrior Noah – a New Year, a new beginning
Noah’s Journey 7 years on — New Years, New Beginnings is written by UKIST trustee Amy The turn of the year is supposed to feel hopeful. new goals new habits new energy a collective exhale but for parents whose child has a diagnosis like infantile spasms a new year feels heavy. you reflect on a […]
Our December warrior Daniel – treasuring each small step forward
Daniel’s story is written by his mum, Ewelina. Our Miraculous Boy and His Incredible Strength. Our beloved son Daniel was born on May 8, 2022, at 37 weeks. His birth was induced because of gestational diabetes and a sudden slowing in his growth between weeks 32 and 36. When he finally arrived, everything seemed fine. […]
Our November warrior Barnaby – waiting for epilepsy surgery
Barnaby’s story has been written by his mum Charlotte Our beautiful baby Barnaby was born on the 19th of January 2023, happy and healthy and not a worry in the world. He was doing really well but at around 5 weeks old we started to notice weird eye movements, they were so quick after he […]
Our October warrior – Isobel’s Journey: A Story of Strength, Resilience, and Hope
Isobel’s story has been written by her mum, Hollie. Isobel was born in January 2023 at just 25 weeks gestation: a tiny warrior entering the world far earlier than expected. She spent 16 weeks in the NICU across three hospitals: a whirlwind of machines, monitors, and miracles. What I thought would be the greatest battle […]
