For most parents, our worst nightmare is that our child stops breathing.
In Rett Syndrome, breathing problems are commonplace, but what would you do if your child needed to be resuscitated? Worse still, what if they weren’t able to be saved?
In this episode, I’m speaking to the brave and brilliant, Dr Helen Crompton, whose daughter Shelley, died in 1994 at the age of 11.
It was a privilege to speak with Helen about how she both overcame and learned to live alongside her grief by doing first a degree, then a Masters, then a PhD, caring for her two young boys at the same time.
We talk about everything from what it was like searching for answers back in the 80’s, to finally receiving a diagnosis from Dr Andreas Rett himself and the positive effect that inclusion and having more children had on Shelley, and all the family, after Shelley died.
Please don’t be put off listening to this episode because of the sadness of Shelley’s death. It’s full of the spirit of Shelley and her mum, Helen; love, resilience and a wicked sense of humour, which everybody needs in 2020.
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Bereavement support for parents who have lost children up to the age of 25 https://www.childbereavementuk.org
For more information about the Rorschach test https://openpsychometrics.org/tests/HEMCR/
For anyone struggling in any way, including if you are feeling suicidal:
Rett UK (Previously the Rett Syndrome Association UK) -Family support and information https://www.rettuk.org