5 Questions with Jenny Rawling co-founder of The UK Infantile Spasms Trust (UKIST)
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Images courtesy of Jenny Rawling 86
Please share a little background about your rare journey with us Our journey with rare epilepsy began in January 2015 when our seven month old daughter Faith started to display some odd behaviour. We had first noticed she was out of sorts over the Christmas holidays – I’d had hopes of handing her over to doting aunties at our family Christmas but she was withdrawn and clingy. She was also ‘refusing’ to sit, having previously been quite happy in supported sitting, and wanted to be held all the time. There are a hundred reasons why a baby can be grumpy and we didn’t think too much about it. In January she became fussy when feeding and would repeatedly unlatch and then cry. She then had an episode in the bath where she repeatedly flung her arms forward and her eyes rolled. We managed to video this and sent it to a couple of doctors in our family circle, who replied very rapidly telling us to take her to hospital. We were so lucky that because of that insight we presented her with that suspicion and were passed upwards to the A&E consultant who arranged admission and an emergency EEG – she was diagnosed and on treatment for infantile spasms /West syndrome within 24 hours of us filming her. The first weekend in hospital was the loneliest I have ever felt – my husband had to return home to care for our older children, and we were found a cot (and a hard chair) on a renal ward, where none of the staff knew anything about spasms. I was prevented from googling as you couldn’t purchase access to hospital Wi-Fi at the weekend, but one of our family found a patient information leaflet on infantile spasms. Reading it, all my hopes or assumptions about the future drained away – the outlook for her sounded terribly bleak, and the figure that one child in five would die before their fifth birthday was devastating. Once we got home we searched for positive stories and support – and found help from online groups based mainly in the USA but nothing in the UK. Those groups were a lifeline through a gruelling treatment process, a relapse, adrenal insufficiency as a consequence of her treatment and our subsequent worries about development.
