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, […]
News
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 […]
Our September warrior Hugo – a story of resilience
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 […]
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 […]
