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 […]
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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 […]
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 […]
