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Episode #7 Katie Samson

18/01/2021

Anyone with a child with Rett Syndrome remembers the pain of hearing those words for the first time.

That moment is seared on our hearts forever; fear for the life we’ve been plunged into, fear for the future that lies ahead, and fear of what will happen to them after we are gone. 

But what if that first time you heard the words ‘your child has Rett Syndrome’ was not the last?

What if your child with Rett had a twin; a twin who was happily growing and learning and changing? What if you then found out she had Rett Syndrome as well?

This is exactly what happened to today’s podcast guest, Katie Samson. Mum to Amelia and Ruby, Katie openly shared her story with me and wowed me with her adaptability, resilience and positive mental attitude.

With a long period in hospital and Amelia’s diagnosis only taking place in late 2019, Katie and husband, Pete, barely had time to blink before the national/local lockdowns which have since followed, which has meant that they have spent a large part of the time since the girls’ diagnoses, at home, with limited external support for Amelia and Ruby and for themselves.

Nonetheless, I found this a bright and motivating, as well as moving conversation. If you’re in need of a little lift today, grab your headphones and have a listen to this.

Both Katie and I would love to know what you thought of our conversation. Contact rachael@reverserett.org.uk with your thoughts or leave a review on whatever platform you listen to podcasts on.

Disclaimer: This episode was taped before the current national lockdown, when both Katie and I were in Tier 3 areas.

Links

Twin Research organisation/Registry

Information about identical twins and genetics

Family Fund

Daisy Garland -for children with drug resistant epilepsy and their families

Brick House Cottages