The Reverse Rett Podcast18 Helmi 2021

Ep 08 Joanna Tomlin

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

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Jaksot(27)

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Ep 23 Victoria Scott

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Ep 22 Cameron Ross

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Ep 21 Helen Simmonds

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Ep 20 David Wainwright

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