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 […]
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 […]
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 […]
The Summit Club – They did it !!
We would like to say a massive THANK YOU to Sacha Rehmat, Adrian Tisi, Stuart Taylor, Robert White and Chris Sidwell Smith – aka The Summit Club from Palo Alto Networks who on Wednesday 18th September took on the mammoth challenge of climbing Ben Nevis.for UKIST. We cannot thank these guys enough! Every penny raised […]
September Warrior – Maia
I’d like to introduce you to my beautiful Maia. She is my much longed for 3rd baby (although she has recently also become a big sister herself!). She was born at 39 weeks by elective c-section and it was a lovely, complication free birth. From day 1 she was such a content, happy little girl […]
August warrior – Charlie’s story
At 10 weeks old our son Charlie was diagnosed with infantile spasms and West Syndrome, but after numerous tests and scans no cause could be found. He began treatment with prednisolone and vigabatrin which really helped and he was initially spasm free with a clear EEG. Apart from the side effects of the steroid with his puffy face and gaining weight faster […]
Thank you to Brook Foods
Brook Food Processing Equipment 25th Anniversary charity donations hit £10,000 with June’s donation going to UKIST. As Brook Food reach the half way point of their silver anniversary celebrations, the chosen charity for June was the UK Infantile Spasms Trust. Brook Food Processing who pride themselves on being a family run business, for the second […]
