New scheme for supportive seating for our warriors.

This gorgeous gang are eight of the twenty-two UKIST warriors that have so far been provided with CushiTush seats. Many of our babies struggle with delayed gross motor skills after treatment for IS, and this supportive seating allows babies without full trunk control to sit up and practise fine motor skills (otherwise known as playing!) […]

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UKIST granted national lottery community funding!

We’re extremely pleased to share some exiting news! UKIST has secured some much-needed funding from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund 🌟 One of UKIST’s core ambitions is to provide a network of support to parents and carers with children affected by infantile spasms. In this Covid19 pandemic, we […]

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August warrior – Harry

Harry’s story so far is told by his mum Rebecca. Harry was my second baby. I had a totally normal pregnancy, which was actually easier than the first! Delivery, again, seemed totally normal. I had a lovely water birth and, once slow labour had peaked, he was delivered very quickly at 12:25am on the 1st […]

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July warrior – Noah

Noah’s story is told by his mum, Amy. Noah’s nickname is Pickle, and no nickname could be more accurate for this little warrior! He is a cheeky little monkey, who has been a Pickle since the moment of conception! This is our story. Throughout my whole pregnancy I suffered hyperemesis gravidarum (extreme morning sickness). At […]

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UKIST AGM report

UKIST AGM REPORT SATURDAY 2 MAY, VIA ZOOM Attendees: Belen Robbins, Jenny Rawling, Samia Sanders, Clare Garvey, Louisa Freer, Alice Goldhill, and Michelle Scoffield. 1. UKIST ambitions Trustees unanimously agreed to maintain the current charity ambitions, with no amendments: – Educate – to improve awareness of the symptoms of infantile spasms amongst the medical profession […]

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Our May warrior – Benas

Benas was a much wanted baby.  My pregnancy was normal but I was anxious after a previous miscarriage. I remember when I told my older son that he will have a brother or sister he was so happy and kissed my belly every day. Benas was born with the midwife’s help as he was stuck […]

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April warrior – Charlotte

On 31st January 2016 Charlotte was born via emergency C-section five weeks early. She has two older brothers who were very excited to meet their new sister. Charlotte struggled to feed from the start and was diagnosed with neonatal sepsis. After twp weeks of antibiotics she was allowed home and we thought all was well. […]

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March warrior – Lucio’s story

Lucio’s journey is shared by his grandmother Pauline.   When our second grandson was born he was healthy and developing well. Our nightmare began when we noticed strange movements which the consultants said was colic. As a paediatric nurse I wasn’t happy with this diagnosis as I thought he was having spasms or fits. Luckily […]

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