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 […]
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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 […]
UKIST family day at the Childrens’ Adventure Farm Trust
For the first time since Covid disrupted our plans, we were able to get some of our UKIST families together at the wonderful Childrens’ Adventure Farm Trust in Cheshire. It was a fantastic day for all the families who attended and grateful thanks to the CAFT staff for ensuring everyone was able to participate. They […]
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 […]
July – celebrating achievements
Every month we have a special thread in our closed support group to share and celebrate the milestones (and inchstones) that our children have achieved. Today they were just so lovely I asked for permission to share some. These little warriors just quietly keep on trucking despite their challenges. Heartwarming! It’s hard to […]
Our June warrior – and a silver lining for UKIST
Our June warrior is the daughter of Alice Goldhill who has since joined us as a trustee and has been invaluable in pushing forward our work to improve awareness within the medical profession. Daisy was born in October 2018 after an uneventful pregnancy. I remember feeling so lucky that our third child was here, and […]
