Our August warrior is Tia, whose story has been written by her mum Chloe Tia started displaying “strange” movements around October 2019 when she was 3 months old. We took her up to the local A&E where they said it was reflux. I knew something wasn’t quite right and kept taking her back numerous […]
Warrior posts
July warrior – lovely Lola.
Our UKIST warrior for July is Lola, her story is told by her mum, Lisa. On 8th May 2020 we were joining in our our street party for VE day and Lola at 7 months old was not settling to sleep, which was unusual as she loved her sleep. We noticed as she was finally […]
June warrior – Madeline – diagnosed in a pandemic
My little girl Madeline was diagnosed with IS at seven months old. I had noticed some strange movements one Thursday evening during dinner. At first I thought she just didn’t enjoy my cooking! But when they happened again over the weekend I was concerned and went to A&E first thing Sunday morning after ringing 111. […]
Our May warrior – Henry
In October 2020 we noticed our son Henry doing a strange new head movement where it looked like his eyes rolled back. We called the doctor who initially wasn’t too worried and it was only due to the persistence of my wife that we were granted a hospital referral. We spoke to a doctor working […]
Our April warrior – Jack
Jack was born a healthy, happy baby by a planned C-section just under 40 weeks. Everything was fine, we got out of hospital the next day and started our new journey as a family of four. On day 2 we noticed Jack having little jerks lasting just moments, by the early hours of day 3 […]
Our March warrior – Myles
Hi I’m Nicole and my fiancé is Josh. Myles is our first baby together, he was first diagnosed with epilepsy when he was a week old, but we thought this was under control until he was around three months old when we noticed he was doing movements we hadn’t seen before. We took him to […]
February warrior – Seren
This month’s warrior is Seren – her mother Cat shares their progress as they have reached the milestone of four years after her diagnosis. We’d like to extend a big thank you to Cat and to others like her who remain in our support group years after their diagnosis to offer support to other families. […]
January warrior – Rachel’s story – three years on
Our daughter Rachel is now 3 ½ years old, and on January 3rd 2021 it will be 3 years to the day since, as a 6 month old, we noticed her starting to do very odd head movements. The 3rd January 2018 was the first day the schools were back, but our 5 year old […]
UKIST’s October warrior – Jonjoe’s story
Jonjoe and his twin brother Jamie were born prematurely at 28 weeks by emergency C-section. Jonjoe was the bigger, stronger twin at a whopping 2lb10oz and pretty much sailed through NICU. He was the twin we thought we didn’t have to worry about! It soon became apparent to me that there was something not quite […]
