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 […]
UKIST News
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 […]
July warrior – Jaxon.
Jaxon’s story – as told by his mum Emma, highlights the difficulty in getting swift action when infantile spasms are suspected, even in children known to be at increased risk of developing them because of an underlying condition. UKIST supports worried parents like Emma to advocate for rapid diagnosis and treatment for their children. One […]
UKIST at RCPCH Epilepsy conference
UKIST sent two representatives to the Royal College of Paediatrics and Child Health Epilepsy conference in London. We attended last year as delegates, this year we were presenting a poster in their exhibition and handing out our patient booklets to neurologists, paediatricians and epilepsy nurses. We got fantastic feedback and made lots of new contacts. […]
UKIST warrior of the month – June
Our ‘warrior’ this month is the lovely Tristan, his story is told by his dad Adrian, who is now one of our network of regional parent ambassadors. It illustrates why our focus at UKIST is on raising awareness within the medical profession to speed up diagnosis – as delayed diagnosis affects long term outcomes. […]
AGM 2019 Minutes
Our third UKIST AGM was held on Saturday 4th May 2019. UKIST was set up by a group of UK based parents whose children had suffered or were suffering with Infantile Spasms. All Trustees are volunteers who dedicate their time to the charity around their working and home lives with the united goal of wanting […]
Our annual trustee meeting was on 4th May
Our annual trustee meeting was held on May 4th and we will update you with the annual report, shortly. […]
UKIST joins forces with international charities for awareness week
UKIST has joined over 25 other international charities to spread the word about infantile spasms during Infantile Spasms Awareness Week 2018. Infantile spasms are a medical emergency which can cause catastrophic damage to a child’s brain if they aren’t treated, but many parents are unaware of the signs to look out for, so the charities […]
UKIST autumn grants awarded
UKIST are delighted to announce that we have been able to award a series of grants totalling £3551 to help seven families with equipment or therapies for their children affected by infantile spasms. This is the second round of grants awarded in 2018, and one of our previous recipients had this to say about how […]
Hard won victory
Penny’s mum Dayna tells us about their battle “Our IS journey hasn’t been easy, to say the least. Penny was diagnosed at 9 weeks old and we quickly found out that all the typical meds used to treat infantile spasms weren’t going to work for her. The cause of her seizures was a cortical dysplasia […]
