Our July warrior Betsy

Our June warrior’s story is written by her mum, Sally Betsy was born by Caesarian section, I had a normal pregnancy with no complications and have three other children who were over the moon to be big brothers. Everything was going well, she was hitting milestones and developing as she should. Around Christmas time we […]

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Our May warrior Millie

Millie was born 9th September 2021, around Christmas/January time we noticed that she wasn’t using her right arm half as much as her left. After numerous doctor visits we were referred to a paediatrician. However, in March I noticed she was doing some unusual movements, a bit like she was being made to jump and […]

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Outnumbered and The Realisation

Many of our members really related to the poem ‘Outnumbered’ by Becky Hemsley (shared here with her permission) which speaks about the experience of having a child with special needs and being made to feel they don’t measure up. More Becky Hemsley poetry The second poem was written by a member of our support group […]

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ukist 2024 newletter

UKIST 2024 Annual update

Dear Supporters, Partners, and Friends, We are thrilled to share with you the impact made by the UK Infantile Spasms Trust in the past year. Your unwavering support has been the driving force behind our success, and we are excited to highlight the positive impact we’ve had on the lives of families affected by infantile […]

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World Down Syndrome Day – meet Reuben

Today is World Down Syndrome Day and also UKIST’s 7th birthday and to help celebrate I’m very honoured to be sharing my story about my beautiful boy Reuben. Reuben was born in January 2019 and came into the world rocking an extra chromosome. I knew in pregnancy that there was a 1 in 14 chance […]

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Save your vision month

March is National Save your Vision Month – and vision is a hot topic for families of children with infantile spasms for two reasons; Firstly, Vigabatrin, one of the first line and most effective treatments for infantile spasms, has the potential to cause toxicity to the retina and permanent loss of peripheral vision. A diagnosis […]

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Our March warrior Isaac

Isaac was born in July 2022 after a pretty smooth sailing pregnancy (although in the middle of a heatwave!) He was a happy baby who was an amazing sleeper In January 2023, I noticed some strange movements when Isaac woke from a nap. After being dismissed by the GP who told me “it is not […]

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Medical education – don’t forget the bubbles

UKIST are very grateful to Dr Alice Goldhill, a GP partner and one of our trustees, for contributing a medical education segment to the paediatric education site  ‘Don’t forget the Bubbles’ to help educate other doctors on infantile spasms. The piece can be found here Infantile Spasms – Don’t Forget the Bubbles (dontforgetthebubbles.com)  Alice is […]

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