Our January post is an update on a previous story – written by Tristan’s dad Adrian. Looking back over the last four years it’s been one hell of a ride. There have been some highs but also some lows that have had me on my knees in tears wondering how I’m gonna have the strength […]
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July warrior – lovely Lola.
Our UKIST warrior for July is Lola, her story is told by her mum, Lisa. On 8th May 2020 we were joining in our our street party for VE day and Lola at 7 months old was not settling to sleep, which was unusual as she loved her sleep. We noticed as she was finally […]
Our December warrior – Kasper’s story
The day Kasper was diagnosed with infantile spasms (IS) was possibly the worst day of our lives. It seemed impossible that our little baby could be ill. He was born perfectly healthy at 1am after a normal birth, one day after his due date. We joked that his half-English side was winning over his punctual […]
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, […]
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 […]
UKIST’s October warrior – Jonjoe’s story
Jonjoe and his twin brother Jamie were born prematurely at 28 weeks by emergency C-section. Jonjoe was the bigger, stronger twin at a whopping 2lb10oz and pretty much sailed through NICU. He was the twin we thought we didn’t have to worry about! It soon became apparent to me that there was something not quite […]
