UKIST hosted another successful family day at CAFT in Cheshire – this is now an annual event that our northern families look forward to all year! It’s so lovely to see the children having fun in an environment that is accessible for everyone. This year had an extra Halloween twist with spooky fun in the […]
News
An extra/bonus warrior – Stephen’s story
Stephen’s story has been written by his father Kevin, who contacted UKIST after discovering us online. Stephen was diagnosed with infantile spasms in the early eighties, at which point there was no specialised infantile spasms support. The charity was founded in 2017 after a group of parents experienced a similar lack of support thirty years […]
Our October warrior Chloe – battling premature birth and infantile spasms
Chloe’s story has been written by her mum, Mechelle Chloe was born not breathing in 2019 at just 28 weeks and five days gestation. In her first few days she battled both sepsis and meningitis. During a routine X-ray they realised she had a cyst on her airway which meant one of her lungs was […]
Our September warrior Charlotte – recovering from epilepsy surgery
Charlotte’s story is written by her mum Jaimee and is a follow up to an earlier warrior post April warrior – Charlotte After a couple of years of keeping on top of Charlotte’s seizures with a mixture of many different medications and increasing doses, we got to February 2025 and we completely lost […]
Our August warrior Otis – a diagnosis is an obstacle but not a barrier.
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 […]
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 Aasiyah
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 […]
