We received a lovely testimonial from Emma, a member of our support group: “Just over nine months ago we were lucky enough to be awarded a grant by UKIST to fund a GoTo seat for my lovely little boy Jaxon who has battled IS/epilepsy for over 15 months now without ever really gaining control of […]
News
September warrior – Joey’s story.
On the 11th of June 2017 Joey Silke arrived after a healthy pregnancy and a drug free natural birth. We were thrilled as was his older sister Molly. Joey was like every other baby development wise and was sleeping through the night from 4 weeks old. At 6 months old I noticed some odd movements, […]
New scheme for supportive seating for our warriors.
This gorgeous gang are eight of the twenty-two UKIST warriors that have so far been provided with CushiTush seats. Many of our babies struggle with delayed gross motor skills after treatment for IS, and this supportive seating allows babies without full trunk control to sit up and practise fine motor skills (otherwise known as playing!) […]
UKIST granted national lottery community funding!
We’re extremely pleased to share some exiting news! UKIST has secured some much-needed funding from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund 🌟 One of UKIST’s core ambitions is to provide a network of support to parents and carers with children affected by infantile spasms. In this Covid19 pandemic, we […]
August warrior – Harry
Harry’s story so far is told by his mum Rebecca. Harry was my second baby. I had a totally normal pregnancy, which was actually easier than the first! Delivery, again, seemed totally normal. I had a lovely water birth and, once slow labour had peaked, he was delivered very quickly at 12:25am on the 1st […]
July warrior – Noah
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 […]
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. […]
