On December 19th, 2023, our beautiful baby boy Hugo, was born. His arrival wasn’t without complications, after a delayed pre-eclampsia diagnosis, I was induced a week later. I spent four days on the induction ward followed by 22 hours of labour before Hugo entered the world. Our beautiful little boy immediately endured 30 minutes of […]
News
Our July warrior Bea – lighting up the room
Bea’s story is written by her mum, Coleen. Infantile spasms is frequently initially misdiagnosed as more commonly occurring conditions in infants like colic, CMPA, Sandifer’s syndrome Bea was born in September 2019 after an uneventful pregnancy. The early weeks were difficult, but nothing that we thought was out of the ordinary. She struggled to maintain […]
UKIST takeovers – Camp Mohawk and Creative Space Centre
As parents and family members of children with a rare condition, we recognise the value of opportunities to meet face to face with other families to share experiences and cement online friendships. With this in mind UKIST host several annual events, taking over facilities that are adapted for children with additional needs, to give our […]
Our June warrior Miles
Miles’ story is shared by his mum, Katie. Miles was born May 2023 following a straightforward pregnancy and birth. We went straight home with our perfect little 8lb 6 boy.. Life was great for the next 9 weeks until Miles was admitted into hospital with urosepsis. Our world was turned upside down, with our baby […]
Our May warrior Ellie – infantile spasms and HIE
Ellie’s story is shared by her mum, Kim This is my amazing little warrior Ellie, she’s just turned 1 in April, a milestone we weren’t sure she would reach at the beginning. At birth Ellie suffered a H.I.E event (HIE stands for Hypoxic-Ischemic Encephalopathy, a brain injury caused by a lack of oxygen and blood […]
Fabulous fundraisers – the London Landmarks half marathon
UKIST would like to say a massive thank you to our fab four – Kylie, Kerry, Joe and Amy – who all completed the LLHM on Sunday 6th April on behalf of the charity. Our trustees Sue and Louisa had a great time manning the cheer station. Here are the stories of why our runners […]
Fabulous fundraisers – the Northern Traverse
Anthony Bretherton decided to take on the gruelling Northern Traverse challenge to raise money My youngest son Sam was diagnosed with infantile spasms (which is an early form of epilepsy) at just 5 months old, experiencing multiple seizures each day. This condition often goes undiagnosed, leading to severe developmental issues. Thanks to the incredible care […]
Our April warrior Charlotte
Charlotte arrived in February 2023. She was one of the 591,072 births in England and Wales that year. The pregnancy had gone well with no major concerns and we were all excited for her arrival. The next few months we got into new parent life and watched our baby girl grow. It was around September […]
UKIST is eight – our 2025 annual update
Dear supporters, partners and friends, As UKIST arrives at our eighth birthday we’d like to reflect on the year 2024-25. Our mission remains steadfast; to improve the lives of children and families affected by infantile spasms through education, support and research. This year, our volunteers continued to build a community that understands, supports and empowers […]
Our March warrior Jude
Jude’s story is written by his mum, Louise. April ‘23 kinda feels a lifetime ago, and just like yesterday too, as the memory is so fresh. I had a gut feeling of ‘something is up, and then this is bad’. Jude’s diagnosis was quick in some ways. The first unusual movements or spasms were noticed […]
