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 […]
Warrior posts
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 […]
Our November warrior Nell – finding therapies to unlock her potential.
Nell’s story is written by her mum Amber and shows how hard parents work to achieve the best outcomes for their warrior children. Amber’s vision therapist Jordan kindly gave a talk for UKIST about cortical visual impairment which can be found here https://www.youtube.com/watch?v=ZUo4yfpOfSo&t=37s “Babies do weird and wonderful things” was the response of the consultant, […]
Our October warrior – Gene
Gene’s story is written by his father, Ryan Me and my fiancée Charlotte wanted to share our little man’s story, Gene Gardner. It was November 2020, Gene had been at Charlotte’s mum’s that afternoon, as we had been for some food. When we picked him up her mum said that he had been doing some […]
Our September warrior Callum – starting school after an IS diagnosis
Our rainbow baby boy Callum was born two weeks late in the middle of August 2018. I had a fairly easy-going pregnancy until our 20-week scan when we were told Callum had some extra fluid in the right ventricle of his brain, but it was nothing to worry about. I continued to have monthly check- […]
August achievers
This month we are choosing to feature the achievements of a number of our children – every child affected by infantile spasms has their own unique challenges but they share a determination not to let anything stop them. Enjoy! Indie – still on treatment but pulling to stand on her own! Since the first […]
