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 […]

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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 […]

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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, […]

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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 […]

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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 […]

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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 […]

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Our May warrior – Violet

When we found out we were pregnant with our second child we were delighted! We had always wanted a sibling for our 3-year-old son Ronnie. The pregnancy progressed as normal, with no causes for concern, until we attended a routine scan at 36 weeks. The sonographer noticed something unexpected on our daughter’s brain. The ultrasound […]

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