The Reverse Rett Podcast

Today's podcast conversation is with Dr Jocelyn LeBlanc. Jocelyn earned her PhD in neuroscience from Harvard Medical School where she worked in the laboratory of Dr. Michela Fagiolini. Jocelyn then made the unusual shift from working with Rett mice to working with children with Rett Syndrome at Boston Children's Hospital.

Now resident in the UK with her own family, Jocelyn works for the umbrella medical research organisation, the Association of Medical Research Charities where she oversees the collection, analysis and publication of sector data to demonstrate the scale of charity investment in medical research and highlight the impact of this research on people and society.

In this conversation, Jocelyn shares the impact of her first meeting with a young patient with Rett Syndrome and provides some insight into what she learned from studies conducted with these children and families. We also discuss the work of AMRC and why membership is so important to small medical research charities like Reverse Rett, particularly now during the on-going pandemic.

I am grateful to Jocelyn for taking the time to speak to me and especially for indulging my unscientific contemplation of what goes on inside the minds of people with Rett Syndrome. As always, we'd love to know what you think of the podcast. Please don't forget to like and subscribe.

https://www.reverserett.org.uk

What can I say about this week's podcast conversation? Paul is a Londoner-Kiwi, Master of Philosophy and History, a runner, a former Disability Access worker and most significantly, father to Eowyn and Jake.

Paul and Eowyn's mother met in the 70's and had Eowyn when they were both just 20 years old. When they couldn't find an answer to what was happening to their baby in New Zealand, they got on a plane, heading for Great Ormond Street to do whatever they could to help their little girl.

If you're in need of an emotional lift today, look no further. Paul's is a story of deep love, but also loss; of adventure and hope and infinite death defying dedication to his beloved daughter.

I am grateful to Paul for his generosity in sharing the story of his beautiful girl. We hope you get something out of it too. Please also leave us a review/comment and above all, please subscribe on whatever platform you listen to podcasts on. https://www.reverserett.org.uk

This week I'm talking to a true Rett Warrior, Neil Fowler.

Neil's daughter, Ciara was diagnosed with Rett Syndrome and he discovered Reverse Rett in 2012 when he saw the 'Cure for Dylan' ride on Sky Sports and he's been pushing his body and mind to the limit ever since.

We discuss his amazing family, his wife Gayle and his other two children, Michael and Sofia who have both followed in his fundraising footsteps, his challenges both past and present, his devastation at Ciara's diagnosis and touch on some of the mental health problems that parents go through, especially dads.

I really enjoyed talking to Neil so openly. It was, in a way, a kind of therapy. We've been friends for many years and done challenges together but being big, bald, Northern men we've never opened up fully. We are definitely both cut from the same cloth though I think he's slightly angrier than me.

Thank you to Neil for joining me this week and for being so candid throughout our conversation.

We would both love to know what you thought of our conversation so please leave a review on whatever platform you listen to podcasts on.

In this episode, I am speaking to the courageous and articulate Minati Das, mother of Tara age almost 10. I 'met' the devastated Minati seven years ago when Tara was first diagnosed with Rett Syndrome.I find Minati today, seasoned in Rett, a solid straight speaker and advocate and currently expecting a new baby after so many years of looking after Tara as an only child.

In this moving episode, we talk about the relentless nature of Rett Syndrome; how the symptoms continue to rain. What it's like learning and re-learning to live with new symptoms, adapting and moving on, but always on a knife-edge, waiting to see what else is around the corner.

This is a super emotional episode. I am grateful to Minati for her openness about what her family has experienced over the last ten years. Between us, we cover diagnosis, seizures, blended diet and arguing with God, as well as acknowledgement vs acceptance, prepping Tara for sharing the TV when the new baby comes and how the crying never stops (us not them).

As always, we'd love to know what you think of the podcast. Please rate us on whatever platform you listen on or leave us a comment and don't forget to subscribe. Thanks for listening!

Regular listeners to the podcast may well remember Episode 5, when I spoke to Dr Helen Crompton, mother of Shelley who had Rett Syndrome and died suddenly at the age of 11, all the way back in 1983.

In today's podcast episode, we're revisiting the conversation I had with Helen and sharing some of our deeper and more intimate discussion about Shelley's death and the resounding effect it had on Helen in so many ways for more than twenty years.

In this episode, Helen and I talk about the immediate aftermath of Shelley's death and the years that followed. We also both discuss our personal experience of symptoms of Post Traumatic Stress Disorder and how we learned to manage them.

For those who have listened to the first episode, this is another warm, heartfelt conversation with this courageous woman but disclaimer, some people may find this episode upsetting.

An additional disclaimer, neither Helen nor I are medical doctors or psychologists, we are sharing our personal experiences and things we have learned about ourselves.

Help for anyone feeling suicidal, depressed, anxious and those struggling with addiction issues including alcohol is available. So is help for people struggling with loss and bereavement. Resources linking you to relevant services can be found on the Reverse Rett website on the page for episode 13.

https://www.reverserett.org.uk/podcast/

This week, on the Reverse Rett Podcast, 18-year-old A Level student, Peter Dine who is brother to not one, but two young women with Rett Syndrome, speaks to fellow Rett siblings from Washington State to the East Coast of Scotland in celebration of Young Carer's Action Day 2021.

From the moment they first realised their sibling was different, to the additional anxieties of Covid; from the rage of social inequality to being the one calling 999 and guiding the ambulance home, this is an enlightening episode for special needs parents everywhere.

Huge thanks to Peter, Riley, Angus, Naomi, Finlay for sharing their stories so openly. Big respect to them and all the Young Carers out there whose lives have been inextricably altered by this experience. We hear you and it matters.

Reverse Rett

#MakingChangeHappen for children and adults with #RettSyndrome

My podcast conversation today is with Yvonne Milne, MBE, mother to Clare and Founder of the Rett Syndrome Association UK, now known as Rett UK.

Clare, now 39, was the first person to be diagnosed with Rett Syndrome in the UK and since that day, Yvonne has made it her mission not only to give Clare a healthy a life as possible, but to support other parents and families living with Rett Syndrome all well.

Through this enlightening conversation, Yvonne and I cover so much, about finding a diagnosis for Clare, starting a patient organisation in the days before the internet and some of the things Yvonne and her husband have put in place to ensure that Clare stays as well as possible.

We talk about parent power, respiratory issues, aspiration, chest infections and what it was actually like for Yvonne and Clare, going to Buckingham Palace and getting that MBE.

For me, as Co-founder of another Rett organisation, this conversation was all at once, funny, sad, heart-warming but above all, welded in responsibility; the responsibility each of us has to our daughters and the pain of other families' experiences which is invariably carried with this all-encompassing, deeply personal work.

I am so grateful to Yvonne for taking the time to speak with me. I hope you enjoy the episode. Please let us know by rating the show on whatever platform you listen on or sharing/commenting via social media @reverserett

Thank you for listening!

Show notes including links on the Reverse Rett website here: https://www.reverserett.org.uk/families/episode-11-yvonne-milne/

This week's podcast is with Steph Wood who lives with her husband and young daughter Emilia, in Dornoch in the very far North of Scotland.

Emilia is the magic age of four. That beautiful age when a child's true personality begins to emerge; when they start setting out into the world somewhat independently of their parents, developing preferences for particular other little people and become a tiny friend themselves.

So how is life different when you have a four-year-old with Rett Syndrome? How can you tell who they are without speech? How can you tell who they like? What they want? What's the matter with them when they cry?

Through this honest conversation, Steph and I explore all this and more. We talk about the difficult days of searching for a diagnosis and finally finding Rett. We talk about what it's like having to lift and carry a large child beyond the age that most of us stop lifting babies.

Most importantly, we talk about our shared hope for the future, treatment for our children. Whether that be drugs or therapies to improve their health or their abilities; we'll both take anything that can give them a better life.

We hope you enjoy the episode! Your comments on the podcast enable us to continue to make more podcasts, so please do leave a comment, whatever platform you listen on. Please share on social media with a comment and tag us in @ReverseRett on Twitter, FB and Instagram.

Links

Brainwave

Rett UK/communication info

Potential funding avenues for eye gaze and other equipment

This week we have a change of presenter, me, Andy Stevenson.

It was a real pleasure to spend some time talking to former Professional Footballer, Ironman and dad to Dionne, Mark Reilly.

Mark and I have known each other for a good few years now. We have a lot in common with him and my dad being born in Bellshill, Scotland, they both played professional football with their first club being Motherwell and us both doing the National 3 Peaks as our first challenge for Reverse Rett. Mark is also just 2 weeks younger than me.

During our conversation we talk about his career and his two epic challenges for 2021, the brutal Marathon des Sables (MDS) and a 100 mile run where he will visit 4 of the clubs he played for professionally which he has set a 30 hour time limit on.

Mark has inspired so much support from his former clubs, friends, fans and the media over the past 8 years and his latest adventures have already captured their imagination once again with over £4000 already having been donated.

I'm truly grateful to Mark for taking the time to talk to me so openly. His story of Dionne's life is very similar to my own with my daughter, Beth and spending those couple of hours with him was a real rollercoaster of emotions.

Mark would welcome support on his 100 mile run so if you would like to run a few miles with this Scottish Cup winner on his journey from St Johnstone to Motherwell to St Mirren and finally Kilmarnock please contact Mark at [email protected]

We would both love to know what you thought of our conversation so please leave a review on whatever platform you listen to podcasts on.

Thank you

Support Mark's challenges here

Find out more about the epic Marathon des Sables here

Read Mark's recent interview in the Daily Record

For Joanna Tomlin, life with 34-year-old Keisha, who has Rett Syndrome has been tough enough for the last few years, without a global pandemic.

In recent years, the family lost Keisha's much beloved Dad, Mark, to cancer as well as dealing with another complex gastrointestinal disease for Keisha, on top of Rett Syndrome.

Despite all this, my conversation with Joanna was startlingly stoical, uplifting, inspiring and even funny at times. Jo, her two daughters and granddaughter have pressed on through the last year of lockdown, shielding Keisha at home and even surviving Covid.

What is it that gives someone this kind of resilience? Perhaps it's your child being diagnosed with Rett Syndrome at a time when there was no palpable hope in research.

Maybe it's being told so many times that your daughter is probably not going to survive the year. Or realising that the only way she is going to make it, is because of you; your determination, your action, your questions, your refusal to give in. All of this, over and over again.

In this heartfelt conversation, Jo and I explore these issues as well as just how they've managed on a practical level throughout the last year of lockdown. We talk about the compounding complexity of being a mixed-race family as well loving and caring for a severely disabled person. We discuss how Jo and her girls worked so hard to protect Keisha emotionally as well physically, when her Dad died, and how he lives on through the love of music they shared.

We hope you enjoy this episode! As always, Jo and I would love to know your thoughts. Please leave us a review on any platform. Don't forget to subscribe so that you are reminded when new episodes are published. Thank you!

Resources:

PALS Patient Liaison and Advice Service

Health Watch

Hot Zone Richard Preston

The Fresh Prince of Bel Air

Hospice services for children in the UK

Crohns and Colitis UK

Rett UK