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 […]
Warrior posts
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 […]
Our August warrior Luca
Luca’s story is written by his mum Leah Luca was born in January 2023 a day before his due date. I had a straightforward pregnancy & a peaceful home birth with no complications. Luca was developing well and reaching the usual milestones on time up until around 5 months of age. For a few weeks […]
Our July warrior Betsy – three and thriving!
Our July warrior’s story is written by her mum, Sally Betsy was born by Caesarian section, I had a normal pregnancy with no complications and have three other children who were over the moon to be big brothers. Everything was going well, she was hitting milestones and developing as she should. Around Christmas time we […]
Our June warrior Sariyah – defying the odds
Sariyah Jai is our Warrior Princess. She is beautiful, smart and has the most infectious smile that lights up any room. She cheeky, has a mischievous side and gives the best kisses ever. We recently celebrated her 6th Birthday with a garden party that she was able to enjoy with her family and friends. We […]
