On 31st January 2016 Charlotte was born via emergency C-section five weeks early. She has two older brothers who were very excited to meet their new sister. Charlotte struggled to feed from the start and was diagnosed with neonatal sepsis. After twp weeks of antibiotics she was allowed home and we thought all was well. […]
News
March warrior – Lucio’s story
Lucio’s journey is shared by his grandmother Pauline. When our second grandson was born he was healthy and developing well. Our nightmare began when we noticed strange movements which the consultants said was colic. As a paediatric nurse I wasn’t happy with this diagnosis as I thought he was having spasms or fits. Luckily […]
February Warrior – Faith
This is Faith – she is five and three quarters and she loves rainbows and unicorns, Hama beads, her friends at school and jumping in the deep end! Back in January 2015 all our hopes for her future were snatched away when she was diagnosed with infantile spasms. In retrospect we were lucky in many […]
We are recruiting!
To support the growth and ambitions of UKIST, we’re excited to announce the expansion of our Board of Trustees! UKIST was founded in 2017, and in just 3 years we’ve grown from strength to strength. We’re making great progress towards improving awareness, we’re helping more than 1100 members in our support group, and we continue […]
January warrior – Arthur’s story
This month’s warrior is Arthur – his story is told by his dad Andrew. After a healthy pregnancy, our son, Arthur, was born at term by emergency Caesarean, following unexplained HIE (severe oxygen deprivation). He was given a blood transfusion, resuscitated and transferred to NICU where he was given hypothermic cooling for 72 hours to […]
Fantastic fundraisers dancing for UKIST!
We would like to say a massive thank you to Dayna Teehan, her beautiful daughter Penny and the staff and children of Small Steps Montessori Nursery and Tigers Childcare Preschool Ongar who held a series of events during ISAW including a funday, danceathon, breakfast and facepainting and raised a massive €1230 for UKIST. […]
Christmas wreaths for a good cause
UKIST would like to say a massive thank you to Diane Hodgetts who organised a wreath-making workshop to raise funds for UKIST in honour of her grandson Harry. Harry had infantile spasms when he was 3 months old and although he is spasm free at 3 years old, he continues to have various developmental issues […]
Infantile Spasms Awareness week 2019 – our focus on medical education
Our partners at the Infantile Spasms Action Network developed the mnemonic STOP to raise awareness of the importance of swift diagnosis for IS – See the signs – Take a video – Obtain a diagnosis – Prioritise treatment. We know that one of the major barriers to obtaining a diagnosis and getting rapid treatment is […]
UKIST are crowdfunding for improved GP epilepsy education – we need your help!
UKIST are proud to be participating in the Aviva Community Fund again in 2019. This year, the funding is on an “all or nothing” basis and we need your help! One of our core ambitions is to improve awareness of the symptoms of infantile spasms amongst the medical profession, because without early diagnosis the development […]
Our November warrior – Kayden’s story
Kayden’s story has been written by his mum Stephanie-Leigh. This is our little warrior’s story. Kayden is only ten months old and has already been through so much. I started to notice little head drops when Kayden was four months old. We were initially turned away by the doctors saying he was just gaining […]
