Charlotte arrived in February 2023. She was one of the 591,072 births in England and Wales that year. The pregnancy had gone well with no major concerns and we were all excited for her arrival. The next few months we got into new parent life and watched our baby girl grow. It was around September […]
News
UKIST is eight – our 2025 annual update
Dear supporters, partners and friends, As UKIST arrives at our eighth birthday we’d like to reflect on the year 2024-25. Our mission remains steadfast; to improve the lives of children and families affected by infantile spasms through education, support and research. This year, our volunteers continued to build a community that understands, supports and empowers […]
Our March warrior Jude
Jude’s story is written by his mum, Louise. April ‘23 kinda feels a lifetime ago, and just like yesterday too, as the memory is so fresh. I had a gut feeling of ‘something is up, and then this is bad’. Jude’s diagnosis was quick in some ways. The first unusual movements or spasms were noticed […]
Wizzibug loan scheme
UKIST were delighted to reconnect with staff from Designability at the recent BPNA conference and would like to highlight their scheme to loan a Wizzibug to children throughout the UK. Some of our families have already benefitted “Dusty loves his Wizzybug, we picked it up in August and have had a lot of fun already. […]
Our November warrior Esmé
Esmé’s story has been written by her mum Carly. After a perfectly healthy pregnancy my little warrior Esmé was born via planned c-section on 17th December 2020. As soon as she was born she was very jittery and twitchy. I remember the nurses having to swaddle her hands to her sides to keep her still. […]
A massive thank you to our fabulous fundraisers!
UKIST would like to say an enormous and heartfelt thank you to Steph Smith and her amazing team of fundraisers, who have raised over £10,000 by walking a marathon distance and holding a ‘rock of the pops’ gig in honour of Steph’s son, Presley. Steph said “At the age of 7 weeks old Presley started […]
Our October warrior – Leo
Leo’s story has been written by his mum, Justyna. The day we found out I was pregnant with Leo was one of the happiest days of our lives. My pregnancy was normal. I gave birth at term in April 2023 to a healthy and strong baby boy who brought so much joy to our lives […]
UKIST gives research grant to the BEE study
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 […]
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 […]
