UKIST are constantly humbled by the generosity of the wonderful people who have had some contact with the charity and then volunteer to raise funds for us. We’ve had a busy couple of months with multiple events taking place so we’d like to thank…. Jake and Stuart who attempted the gruelling South Coast 100km […]
News
Helping our pre-verbal children to communicate
Many children struggle with developing speech and communication after an infantile spasms diagnosis so UKIST directs some of our resources to support parents in this area – we have a rolling speech and language course with free access for all support group members and we have been running small group sessions to introduce parents to […]
Our October warrior – Cerys
This is Cerys and this is her story, written by mum Delyth. Cerys was born in March 2012 at 39 weeks after a very straightforward pregnancy and uncomplicated birth. Due to other conditions I suffered with in the past she was our miracle baby. I often think back to those first few months of Cerys’ […]
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 […]
Back to school….
September is an exciting (and anxious) time of year for many of our families as their children start a new school or nursery or move to the next step. This feels like a milestone for all families but particularly for children who have faced such huge challenges in their early years. This September we will […]
Our August warrior – sunshine boy Leo!
Leonardo was born in May 2021. Leo arrived two weeks early and was a very healthy size at birth. Everything seemed great with his development and he seemed to hit milestones early. Around the October time Leo started to change a little. He started to get very irritable and in the evening would spend a […]
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 […]
Our June warrior – Otis
June 2023 is upon us… Otis is turning 2, and reflecting on his life so far I can say that the pathway his life has taken was a million miles from what we thought would happen. As parents to two older adopted children who both have special needs, and some physical disabilities, we really don’t […]
Marvellous marathon runners!
UKIST would like to say a huge thank you to Ben and Emily our London Marathon 2023 finishers! We are so grateful for your efforts and fundraising – between them Ben and Emily raised over £3000 for the charity. If you are inspired by our fabulous fundraisers and would like to attempt a challenge for […]
