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 […]
Warrior posts
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 […]
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 […]
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 […]
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 […]
Our December warrior Jack – adjusting to family life with intractable epilepsy
Hello all, I’m Jack’s Grandma (Nan) Angie, I was asked to do this write up by Jack’s mum, from my perspective, as this is his second time as UKIST December warrior, so here goes… So much has happened since Jack’s last update, I’d love to be able to say amazing changes have taken place, but […]
Our November warrior Esmé
Esmé’s story has been written by her mum Carly. After a perfectly healthy pregnancy my little warrior Esmé was born via planned c-section on 17th December 2020. As soon as she was born she was very jittery and twitchy. I remember the nurses having to swaddle her hands to her sides to keep her still. […]
Our October warrior – Leo
Leo’s story has been written by his mum, Justyna. The day we found out I was pregnant with Leo was one of the happiest days of our lives. My pregnancy was normal. I gave birth at term in April 2023 to a healthy and strong baby boy who brought so much joy to our lives […]
Our September warrior – a ray of ‘son’shine
Our Ray of SonShine, Our Baby H When my little miracle baby was 6 months old, he began showing some strange movements, and without going into the triggering details, my precious boy was diagnosed with Infantile Spasms. ‘Rare’ condition, they said. ‘Development Delays’ ‘Autism’ ‘Front line meds, steriods, seizures’ All the words, I have never […]
