Ella is 4 years old now and just starting mainstream foundation. She was diagnosed with infantile spasms at 16 weeks and then Aicardi syndrome when she was 2 years old. She has had a rocky few years since diagnosis and still battles seizures most days but is always smiling and happy. She is so pleased […]
Warrior posts
Back to school….
September is an exciting (and anxious) time of year for many of our families as their children start a new school or nursery or move to the next step. This feels like a milestone for all families but particularly for children who have faced such huge challenges in their early years. This September we will […]
Our August warrior – sunshine boy Leo!
Leonardo was born in May 2021. Leo arrived two weeks early and was a very healthy size at birth. Everything seemed great with his development and he seemed to hit milestones early. Around the October time Leo started to change a little. He started to get very irritable and in the evening would spend a […]
Our July warrior Rosa
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 […]
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 […]
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 […]
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 […]
