Ep 14 Minati Das

Ep 14 Minati Das

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!

Tämä jakso on lisätty Podme-palveluun avoimen RSS-syötteen kautta eikä se ole Podmen omaa tuotantoa. Siksi jakso saattaa sisältää mainontaa.

Jaksot(27)

Ep 27 Mark "Mavis" Reilly

Ep 27 Mark "Mavis" Reilly

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 ...

13 Heinä 202349min

Ep 26 Ross McKinney and Duncan Hughes

Ep 26 Ross McKinney and Duncan Hughes

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 ...

25 Heinä 202240min

Ep 25 Gareth Warne - Pink Elephant Challenge 3

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...

22 Kesä 202232min

Ep 24 - Mathilde Mastroianni

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 ...

1 Loka 202149min

Ep 23 Victoria Scott

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...

5 Elo 202151min

Ep 22 Cameron Ross

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...

24 Heinä 202140min

Ep 21 Helen Simmonds

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 ...

16 Heinä 202152min

Ep 20 David Wainwright

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...

2 Heinä 202148min

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