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. […]
News
Amazing Alice!
We would like to extend a massive thank you (and our total admiration) to our trustee Alice, who has completed her challenge to run a half marathon every month in 2024 to raise money for UKIST. So far Alice has raised £1950, which with gift aid added brings the total to more than £2400. Anyone […]
Our December warrior Jack – adjusting to family life with intractable epilepsy
Hello all, I’m Jack’s Grandma (Nan) Angie, I was asked to do this write up by Jack’s mum, from my perspective, as this is his second time as UKIST December warrior, so here goes… So much has happened since Jack’s last update, I’d love to be able to say amazing changes have taken place, but […]
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 […]
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 […]
