If you have a friend that doesn’t know what Rett Syndrome is, this episode is for them!
Today, I am speaking to the courageous and articulate, Minati Das, mother of Tara age almost 10. I ‘met’ Minati seven years ago when Tara was first diagnosed. 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).
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The Rett Syndrome reversal experiments
Tube feeding https://www.tube-feeding.com/What-is-Tube-Feeding/
Blended diet Facebook Group https://www.facebook.com/groups/278702472183551/
The Use of Blended Diet with Enteral Feeding Tubes-British Dietetic Association https://www.bda.uk.com/resource/the-use-of-blended-diet-with-enteral-feeding-tubes.html
Ella’s Kitchen https://www.ellaskitchen.co.uk/