The Reverse Rett Podcast

Anyone with a child with Rett Syndrome remembers the pain of hearing those words for the first time.

That moment is seared on our hearts forever; fear for the life we've been plunged into, fear for the future that lies ahead, and fear of what will happen to them after we are gone.

But what if that first time you heard the words 'your child has Rett Syndrome' was not the last?

What if your child with Rett had a twin; a twin who was happily growing and learning and changing? What if you then found out she had Rett Syndrome as well?

This is exactly what happened to today's podcast guest, Katie Samson. Mum to Amelia and Ruby, Katie openly shared her story with me and wowed me with her adaptability, resilience and positive mental attitude.

With a long period in hospital and Amelia's diagnosis only taking place in late 2019, Katie and husband, Pete, barely had time to blink before the national/local lockdowns which have since followed, which has meant that they have spent a large part of the time since the girls' diagnoses, at home, with limited external support for Amelia and Ruby and for themselves.

Nonetheless, I found this a bright and motivating, as well as moving conversation. If you're in need of a little lift today, grab your headphones and have a listen to this.

Both Katie and I would love to know what you thought of our conversation. Contact [email protected] with your thoughts or leave a review on whatever platform you listen to podcasts on.

Links

Twin Research organisation/Registry

Information about identical twins and genetics

Family Fund

Later this year, come what may, Civil Engineer and Dad of four, Ross McKinney and fellow teammates, Ian, Duncan, Fraser and Clive will be setting off to complete the Talisker Whiskey Atlantic Challenge for Reverse Rett.

I don't know much about rowing but with everything that's happening in the world right now, I reckon escaping to row the Atlantic might not sound like such a bad thing to many people who are listening to this podcast…apart from your own physical effort being the only thing moving you across an actual ocean issue.

During our conversation, I find out more about what's actually involved in racing across an ocean in a very small boat with four other people and the levels of deprivation that people who do this have to go through to succeed.

Motivated by 9-year-old daughter, Eliza, who has Rett Syndrome, Ross shares how the challenge came about and how the team continue to prepare to set off later this year despite the ongoing uncertainty around the pandemic.

I'm so grateful to Ross for taking the time to have this conversation. It was moving to hear why research is so important to Ross, Catherine and the strong community behind them. I hope to speak to Ross again later in the year before the team set off and we will of course be following the Five in a Row team on their epic journey.

Find out more about the Five in a Row Challenge here

Find out more about the Talisker Whiskey Challenge here

Podcast on the sleep hacking secrets of the world's top athletes Dr Rangan Chatterjee with Nick Littlehales -Feel Better Live More

Both Ross and I would love to know what you thought of our conversation. Contact Ross directly [email protected] or [email protected] with your thoughts or leave a review on whatever platform you listen to podcasts on.

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 [email protected] or visit samaritans.org

This week's podcast guest is fellow Reverse Rett Co-Founder and Trustee, Rita Ross.

Rita and I met over a decade ago, when a small group of parents formed the charity back in 2009.

Apart from the fact that Rita had a successful career in banking as well as a young daughter, Frankie who has Rett, I didn't really know anything about her. Even after all these years of shared interest in our common goal, we still barely ever get the time to sit down and talk.

In this episode, we talk about now teenage Frankie and how it is having a child or adolescent with Rett to care for, whilst trying to hold down a job.

Rita shares openly about Frankie's early health concerns, her diagnosis of Rett and the love and support which carried the family through.

We talk about the hope that Rita has for Frankie's future, the tenacity required for living life with Rett (for parents too) and the vitality of validating Frankie's frustration and all the dreams she has inside herself.

It was a pleasure to spend this time with Rita and to hear more about how Frankie is getting on.

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.

More information about Oppositional Defiant Disorder

https://contact.org.uk/advice-and-support/health-medical-information/conditions/c/conduct-disorder-and-oppositional-defiant-disorder/

Information about referral to the Centre for Personalised Medicine in Rett Syndrome

https://www.reverserett.org.uk/living-with-rett-syndrome/centre-for-personalised-medicine-in-rett-syndrome-cpmrs/

On this week's podcast, I'm speaking to Dr Ruksana Ahmed, Consultant Clinical Psychologist at New Centre for Personalised Medicine in Rett Syndrome, based under the National and Specialist Child and Adolescent Mental Health Services, CIPPRD, at the Maudsley Hospital in South London.

During our conversation, Ruksana and I touch on those all too familiar feelings; shame, guilt and loss, as well as those critical moments in our experience as Rett parents which may influence our mental health and resilience in the long term.

We also cover questions re Covid-19; are Rett parents are better equipped than most to handle the pandemic? How can we mitigate the lack of touch and physical interaction when separated from loved ones and critically, how to maintain resilience over the months ahead.

I'm very grateful to Ruksana for taking the time to provide this sort of invaluable insight and encouragement to me and to all the people listening.

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

Thanks for listening.

For more information optimism etc. Reverse Rett

Resources

Advice and information for parents with disabled children under the age of 25

https://contact.org.uk/advice-and-support

Support and advice for parents and carers of people with Rett syndrome of any age: https://www.rettuk.org/how-we-can-support-you/telephone-electronic-support-services/

Touch: The Forgotten Sense podcast with Dr Rangan Chatterjee and Professor Francis McGlone

https://drchatterjee.com/touch-forgotten-sense-professor-francis-mcglone/

For more information and referrals to CPMRS: https://www.reverserett.org.uk/living-with-rett-syndrome/centre-for-personalised-medicine-in-rett-syndrome-cpmrs/

Have you ever imagined your child owning their own home? Not such an unusual question for most people. But if your child has Rett Syndrome, this sort of every day dream is often out of reach. Or at least, it might feel that way.

My guest on the podcast today is Zillah Rainback who managed to achieve exactly that on behalf of her then 19 year old daughter Hannah, who has now lived independently with support for ten years, in her very own home.

Find out more about how Zillah made this dream a reality by listening here.

Advance Housing provides housing and support for people with disabilities, learning disabilities, and mental health conditions.

https://www.advanceuk.org/

Current government affordable home ownership schemes https://www.gov.uk/affordable-home-ownership-schemes

Zillah is a volunteer for Rett UK's 'Listening Ear' service. If you'd like to connect with Zillah, please email [email protected] in the first instance

We welcome your feedback. Let us know what you think of the podcast through social media:

A diagnosis like Rett Syndrome can be isolating for families as they learn to adjust to their new normal, whilst everyone around them carries on 'business as usual.'

In this episode of the Reverse Rett Podcast, I'll be talking to fellow mother to a 25-year-old daughter with Rett who now lives in Spain, Catherine Coles who also happens to be my lifelong friend. From diagnosis, to divorce, to our truly darkest moments, nothing is left uncovered in this intimate conversation.

To find out more about Rett Syndrome visit: https://www.reverserett.org.uk