Evelyn’s mum Emma told our Deputy News Editor SianElvin the day her 18 month old daughter fell ill was a ‘very normal day’ in September 2020. This is how she and her husband discovered their children had serious and rare heart conditions.
‘They had explained that they had restarted her heart but they didn’t have any answers yet as to what had caused her cardiac arrest.’
The surgery went well, and she was later diagnosed with Long QT syndrome, which is a very rare genetic condition although neither Jac nor Kelly carry the gene. These symptoms can start unexpectedly and may be triggered by stress, a sudden noise, strenuous exercise or a slow heart rate during sleep. ‘I did struggle a bit after Jaxon was born, because I was terrified something was going to happen to him. Rumi sleeps in my room now with Jaxon in case anything happens.‘I’ve come a long way and don’t do that anymore, and I’m managing it, but the experience has definitely affected me – which I think is only natural.Her family celebrated Kelly’s Heart Hero Award by wearing red She added Rumi is ‘absolutely bossing her life and her milestones, and every day she makes progress’.
Those shortlisted will be invited to an awards ceremony in London on Thursday, December 1, when the winners will be announced.
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