Noah’s story is told by his mum, Amy. Noah’s nickname is Pickle, and no nickname could be more accurate for this little warrior! He is a cheeky little monkey, who has been a Pickle since the moment of conception! This is our story. Throughout my whole pregnancy I suffered hyperemesis gravidarum (extreme morning sickness). At […]
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Our June warrior Hugo – facing brain surgery for intractable seizures
This is Hugo’s story in the words of his mum, Crystal; This is our son Hugo-James. He was diagnosed with Infantile Spasms at six months old. When he was three months old I noticed some odd movements so took him to my hospital and was fobbed off. It was only because I kept going back […]
UKIST AGM report
UKIST AGM REPORT SATURDAY 2 MAY, VIA ZOOM Attendees: Belen Robbins, Jenny Rawling, Samia Sanders, Clare Garvey, Louisa Freer, Alice Goldhill, and Michelle Scoffield. 1. UKIST ambitions Trustees unanimously agreed to maintain the current charity ambitions, with no amendments: – Educate – to improve awareness of the symptoms of infantile spasms amongst the medical profession […]
Our May warrior – Benas
Benas was a much wanted baby. My pregnancy was normal but I was anxious after a previous miscarriage. I remember when I told my older son that he will have a brother or sister he was so happy and kissed my belly every day. Benas was born with the midwife’s help as he was stuck […]
April warrior – Charlotte
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. […]
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. […]
