The Reverse Rett Podcast16 Joulu 2020

Ep 05 Helen Crompton

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.

We welcome your feedback. Let us know what you think of the podcast by leaving a review. Don't forget to subscribe. Thanks for listening.

Additional resources:

Bereavement support https://www.careforthefamily.org.uk/family-life/bereavement-support/bereaved-parent-support

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:

Samaritans - confidential 24/7 emotional support - Call 116 123 or email jo@samaritans.org or visit samaritans.org

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Jaksot(27)

Ep 27 Mark "Mavis" Reilly

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Ep 26 Ross McKinney and Duncan Hughes

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Ep 25 Gareth Warne - Pink Elephant Challenge 3

It's been a while but the Reverse Rett podcast is back! It was a pleasure to speak to the Pink Elephant man himself earlier this week as he approaches his latest crazy challenge for Reverse Rett. Spon...

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Ep 24 - Mathilde Mastroianni

The Reverse Rett podcast is back and in this episode, I'm speaking with Mathilde Mastroianni, Assistant Psychologist at the CIPP Rett Centre, South London and Maudsley NHS Foundation Trust and King's ...

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Ep 23 Victoria Scott

If you were offered a chance to cure your child's disease, would you take it? Not a question we have to think very hard about at Reverse Rett, but this is the fundamental question that underpins Victo...

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Ep 22 Cameron Ross

In this episode of the podcast, I sit down with Cam Ross, older brother to Frankie, and son of Reverse Rett co-founder and Trustee, Rita Ross. We'd never had a conversation before recording this episo...

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Ep 21 Helen Simmonds

In today's podcast episode, I'm speaking to Helen Simmonds, Vice Chair of Reverse Rett and mother to Lauren who is 14 and her younger brother William. I met Helen all the way back in 2011 when Lauren ...

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Ep 20 David Wainwright

This week our guest is one of the busiest dads on the planet, my friend, David Wainwright. David lives in Loughborough with wife, Louise and their three children. His eldest, Georgia has Rett Syndrome...

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