Episode 9

Rare Disease Awareness Month - Gabby's Story

Published on: 26th February, 2025

In this episode today, Tahnee talks with Gabby Zeppieri, the only adult in the US to be diagnosed with Neutral Lipid Storage Disease Myopathy NLSD-M, a rare genetic condition, where fats (lipids) are stored abnormally in organs and tissues throughout the body. The accumulation of fats in muscle tissue leads to muscle weakness (myopathy).

One of the reasons why such a small number of patients have been identified is un-awareness or less information of the disease.

https://www.gabbyswonderfulworld.org/

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The SEND Sofa
One day last year after another overwhelming morning trying to get my distressed SEND son into school, I came home, slumped on the sofa and sobbed. I was at my wits’ end. I didn’t think I could do it a second longer. It made me think of all the other struggling SEND parents out there, possibly on their sofas, crying too. If I felt overwhelmed, so did they. If I was struggling, perhaps I wasn’t alone. The responsibility and pressure of raising a SEND child can sometimes be too much. How could I bring us all together? I wiped my tears, got out my notepad and pen and wrote the first words that came into my head: ‘The SEND Sofa.’ Holy Shiz. It appeared I was about to start a podcast!

And here it is! My name is Tahnee Morgan and my world was rocked when my son, Max, was diagnosed with Kabuki Syndrome in 2017, a rare genetic disorder that affects just 1 in 32,000 births worldwide. In this podcast, I delve into the good, the bad and the ugly of SEND life. Everything and everyone is welcome here. The vibe is genuine, heartfelt and relaxed as I provide a much-needed safe and comfortable space for SEND families to be open and honest about their journey. I will be chatting with parents, medical professionals, therapists and practitioners to gain a better understanding of all things SEND, while having a giggle (or a good cry) along the way.

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Tahnee Morgan

Mum of three beautiful children, teacher, presenter, voiceover artist and of course SEND mum.