The Reverse Rett Podcast
In this episode Mark “Mavis” Reilly. Mark is a former professional footballer; he shares his story and experiences taking on some of the most gruelling physical challenges to raise awareness for Rett Syndrome and his latest challenge next year will be his most challenging so far. Mark’s book, “The Lives of Reilly,” delves deeper into his inspiring journey. All profits from the book will be donated to the charity Reverse Rett. Buy Mark’s book here: The best way to support the podcast is by subscribing so that you get updates as soon as a new episode comes out. Thank you...
info_outline Ep 26 Ross McKinney and Duncan HughesThe Reverse Rett Podcast
The whole Rett Syndrome community were enthralled as the Five in a Row team set off from the Canary Islands last December in the Talisker Whisky Challenge. Rowing the Atlantic is on the bucket list for most adventurers and five guys from Scotland did just that and supported Reverse Rett too. What a test of physical and mental endurance it is! The boys were rowing in honour of Eliza who has Rett Syndrome. Her dad, Ross McKinney was part of the team and it was a real privilege to talk to Ross and the boat's skipper, Duncan Hughes about their epic adventure on the high seas. ...
info_outline Ep 25 Gareth Warne - Pink Elephant Challenge 3The Reverse Rett Podcast
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. Sponsor Gareth at JUST GIVING here: When Gareth Warne lost his sister Reverse Rett didn't exist. In fact, back in 2005 there didn't seem to be any Rett Syndrome research on the horizon. Two years later the reversal experiments happened and the future for people with Rett Syndrome looked suddenly brighter. Sadly, this new hope came too late for Angharad who passed away suddenly aged 17. Gareth...
info_outline Ep 24 - Mathilde MastroianniThe Reverse Rett Podcast
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 College London. Anyone whose child or adult with Rett has been a patient at CIPP Rett, CIPPRD or on a clinical trial at King’s over the last four years will know Tilly. During her time with the CIPP Rett team, she’s been clinical trials co-ordinator, clinical research assistant and assistant psychologist. To families, that means Tilly has been the person they reached out to with questions,...
info_outline Ep 23 Victoria ScottThe Reverse Rett Podcast
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 Victoria Scott’s new novel, 'Patience' which is published today August 5th 2021 by Head of Zeus. I was grateful to have the opportunity to interview Victoria on this episode of the podcast to talk all about Patience; why she wrote this story, how she wrote it and about the characters we get to know throughout. We also talked about Victoria's very personal experience of having a sister with Rett...
info_outline Ep 22 Cameron RossThe Reverse Rett Podcast
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 episode but had supported each other's work from afar, both in fundraising and through Reverse Rett Instagram. In this conversation, we talk about maintaining a strong relationship with our sisters, the pain of watching their condition get worse, and how our friendships and relationships, in general, have been affected by having sisters with Rett. We also chat about fundraising, social media and what...
info_outline Ep 21 Helen SimmondsThe Reverse Rett Podcast
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 had just been diagnosed. Helen was die-hard Reverse Rett from the get go, willing to do anything she could to help make change happen for our children. From the beginning of her family’s journey through the many ups and downs this debilitating condition has led them through, Helen’s dedication to making things better for Lauren, both in the here and now and for the future, has never...
info_outline Ep 20 David WainwrightThe Reverse Rett Podcast
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 and his other daughter, Phoebe has a rare brain condition called Pachygyria & LIS1, coincidently they are both under Professor Santosh at the CIPP Rett Centre and CIPPRD. Their son, Liam also keeps them on their toes. I see his Facebook posts and wonder how they remain so positive and happy in the face of the issues they deal with on a daily basis, they really are an inspiration to me. It was...
info_outline Ep 19 Vincent JohnssonThe Reverse Rett Podcast
This week’s podcast guest is Vincent Johnsson, Dad of Hannah and three boys, he’s also on about day 470 something of a 500 day (yes, 500 days...) 5K a day challenge which started even before the pandemic (can anyone even remember those days?) and has gone on all throughout! At first glance, Vincent is not at all the usual pain-hungry, self-punishing type male we typically witness undergoing these trials of physical and spiritual endurance under the guise of fundraising at Reverse Rett, but he is no less passionate, determined, angry, committed, hopeful and stoical about this never-ending...
info_outline Ep 18 Sara MeredithThe Reverse Rett Podcast
Today my guest on the Reverse Rett Podcast is Sara Meredith, mum of five, writer, storyteller, blogger, and all round hard-loving human. Sara’s third daughter Livvy, was diagnosed with Rett Syndrome after a familiar ongoing struggle to convince professionals that something was wrong. Sara spent the next several years, doing everything she could to give Livvy and her other three daughters, as equal a life as possible, with a positivity which shines through ‘Living Like Livvy,’ Livvy’s story, which was published in 2018 by Andre Govier with all proceeds to benefit Reverse...
info_outlineFor 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 [email protected] or visit samaritans.org