Rosa was born in July 2019 with no complications. She hit all her milestones and was a super happy settled baby. In February 2020 at about 5 months old she developed what I thought then was an eye twitch when she was just about to fall asleep or on awakening. Over the next three weeks […]
News
Our June warrior – Otis
June 2023 is upon us… Otis is turning 2, and reflecting on his life so far I can say that the pathway his life has taken was a million miles from what we thought would happen. As parents to two older adopted children who both have special needs, and some physical disabilities, we really don’t […]
Marvellous marathon runners!
UKIST would like to say a huge thank you to Ben and Emily our London Marathon 2023 finishers! We are so grateful for your efforts and fundraising – between them Ben and Emily raised over £3000 for the charity. If you are inspired by our fabulous fundraisers and would like to attempt a challenge for […]
May – Aaron the ninja warrior!
Mr Gorgeous Aaron’s story is written by his mum, Polly. My first nickname for our Aaron. Looking at him with his gorgeous head of curly hair, beautiful eyes and smile he was our Mr Gorgeous, smiley son, much wanted and loved curly boy. He is turning 9 on 27th May and is still completely gorgeous […]
Our April warrior courageous Cove
Cove’s story is written by her mum Pasha. It all started September 2021, Cove our perfect little girl was just 4 months old. Cove was full of a cold and I know it’s not unusual for babies to be unwell, especially as she has an older brother. I noticed Cove’s body began to make a […]
UKIST has appointed a new trustee – introducing Louise.
UKIST are delighted to announce that Louise Derbyshire was appointed as a trustee at our recent AGM in Birmingham. I’m Louise and this is George. George was born in October 2019 and at around 6 months old, he started becoming irritable and upset everyday. He also became increasingly drowsy, fussy and no longer […]
Layla – living well with refractory epilepsy
This is an update for families who may be in a similar position to us. What happens when the treatment for Infantile Spasms doesn’t work? Well, everybody’s story is different, but here is ours; I remember searching online for other families in the same position as us, googling anything and everything, searching for […]
Our February warrior Agnes – running her own race
Our February warrior’s story is written by her mum, Elle Our lovely daughter Agnes was born in March 2021 after years of trying to conceive. That October she began doing strange movements, and after a few days of worrying and a late-night Google of her symptoms, we came across the UKIST video and headed straight […]
Our December warrior – Jack – treating medication resistant epilepsy with the ketogenic diet
Hello, I’m Jack’s mum, Nichole. This is the story of our little boy’s past year. This time twelve months ago he and I were halfway through a very difficult nine days stay in hospital. Jack’s dad, my partner Jason, wasn’t allowed to stay in the hospital with us, but joined us every evening for a […]
