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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Our April ‘fair warrior’ Finley

We chose the name Finley as it means ‘fair warrior’ and he has certainly lived up to that name. From day one Fin has kept us on our toes! He was born quite poorly and had a seizure within hours of being born. Initially they thought he had been starved of oxygen at birth 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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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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Back to school … part 2

Ella is 4 years old now and just starting mainstream foundation. She was diagnosed with infantile spasms at 16 weeks and then Aicardi syndrome when she was 2 years old. She has had a rocky few years since diagnosis and still battles seizures most days but is always smiling and happy. She is so pleased […]

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Our July warrior Rosa

Rosa was born in July 2019 with no complications. She hit all her milestones and was a super happy settled baby. In February 2020 at about 5 months old she developed what I thought then was an eye twitch when she was just about to fall asleep or on awakening. Over the next three weeks […]

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