Infantile spasms are associated with a higher likelihood of neurodevelopmental conditions like autism, ADHD, language disorders and intellectual disability. A better understanding of the impact of and effective interventions for developmental difficulties in early-onset epilepsy is a research priority identified by patients, carers, policymakers and healthcare professionals. Cognitive and behavioural difficulties result in many children […]
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Our September warrior – a ray of ‘son’shine
Our Ray of SonShine, Our Baby H When my little miracle baby was 6 months old, he began showing some strange movements, and without going into the triggering details, my precious boy was diagnosed with Infantile Spasms. ‘Rare’ condition, they said. ‘Development Delays’ ‘Autism’ ‘Front line meds, steriods, seizures’ All the words, I have never […]
Our August warrior Luca
Luca’s story is written by his mum Leah Luca was born in January 2023 a day before his due date. I had a straightforward pregnancy & a peaceful home birth with no complications. Luca was developing well and reaching the usual milestones on time up until around 5 months of age. For a few weeks […]
Our July warrior Betsy – three and thriving!
Our July 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 […]
Our June warrior Sariyah – defying the odds
Sariyah Jai is our Warrior Princess. She is beautiful, smart and has the most infectious smile that lights up any room. She cheeky, has a mischievous side and gives the best kisses ever. We recently celebrated her 6th Birthday with a garden party that she was able to enjoy with her family and friends. We […]
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 […]
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 […]
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 […]
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 […]
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 […]
