Living with Apert Syndrome: Xavier's Story

The SEND Sofa · 2025-04-30

01:06:13

In 2019, Katy Martins welcomed her fourth child, a son named Xavier. Shortly after his birth, Xavier was diagnosed with Apert Syndrome—a rare genetic condition that affects approximately 1 in every 65,000 to 88,000 live births. Today, Katy sits down with Tahnee to share their family’s journey. Tune in as we explore what Apert Syndrome is, how it affects those who live with it, and the strength and resilience behind their story.

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/apert-syndrome/

www.katymartinsyoga. com

insta: katy.martins77

facebook: katymartinsyoga

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.

So, grab a cuppa (or a glass of wine!) and join me on the Send Sofa.

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