UKIST has appointed a new trustee – introducing Louise.

UKIST are delighted to announce that Louise Derbyshire was appointed as a trustee at our recent AGM in Birmingham.


I’m Louise and this is George.


George was born in October 2019 and at around 6 months old, he started becoming irritable and upset everyday. He also became increasingly drowsy, fussy and no longer able to hold his rattle. His irritability was put down to colic and silent reflux.


Over the next couple of weeks, George started having episodes where his eyes would roll upwards and his arms would move outwards for a second at a time. The episodes started increasing in frequency and that’s when we knew something was definitely wrong.


I called 111 and explained that after googling, I felt my baby was having infantile spasms and needed to be seen urgently. At the hospital, a junior doctor said that we were being ‘over-anxious parents’ and that the movements were ‘reflux.’ We were then discharged.


Over the weekend, the spasms got much worse and I contacted a doctor we had seen privately earlier that year. He got us back into hospital and arranged an EEG which showed hypsarrhythmia and the diagnosis of Infantile spasms/West Syndrome was made. George started immediate treatment of Vigabatrin with Prednisolone and the spasms stopped within 48 hours. No cause has ever been found.


It was a truly terrifying time to suddenly be facing so many unknowns for George’s future and the grief and anxiety was overwhelming. It was at this time I found the UKIST support group who offered us reassurance and hope.


Today, George is a very happy boy who loves trains, animals and going to nursery. We’re so proud of how much he has overcome and progressed since the diagnosis. Having made it through this terrible time, I am determined to help other families in the same way that UKIST helped us and also raise awareness of this condition. I feel very proud and honoured to take up the role of trustee for this incredible charity.