Otis was our June warrior back in 2023, when he was two – this is an update on his progress. Without rehashing large quantities of information (feel free to go back and read his previous post https://ukinfantilespasmstrust.org/our-june-warrior-otis/ first): • Otis was diagnosed with infantile spasms at 5 months and standard treatment didn’t initially work, higher […]
News
Our July warrior Thomas – blossoming after brain injury.
Thomas’ story is written by his mum, Abi. When I was 39 weeks pregnant, we went into hospital for what we thought would be a routine scan. I’d had a fairly uneventful pregnancy, and we were excited to see our baby one last time before he arrived. Instead, we were told that my placenta was […]
Our June warrior
Our June warrior’s story is written by her mum Tahirah Aasiyah was born full-term in hospital. I had a healthy pregnancy and was planning a home birth, but due to meconium in my waters, we had to go into hospital. When Aasiyah was born, she was very floppy and we spent six weeks in […]
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 […]
