This episode marks a year of The SEND Mum Club podcast. Thank you so much for listening!

Liz Day is my guest this week, talking about her 4 year old son Henry who has the CASK gene mutation, an extremely rare genetic condition that affects boys much more severely than girls. We discuss the bleak outcome they were told to expect in terms of life expectancy and how Henry has already proved the doctors wrong. Liz talks about going back to work and how she manages that alongside Henry’s needs. We discuss how hard it is to give over some of Henry’s care to carers and the difficulty in finding peer support when his condition is so rare in boys.

Liz mentions the Unique charity as a good resource if you’d like to learn more about Henry’s condition https://rarechromo.org/disorder-guides/

You can find Liz on Instagram @medical_mumma_kickingcask

Founder and CEO of Down Syndrome UK Nicola Enoch joins be this week for a special episode in the run up to World Down Syndrome Day on March 21st. We discuss Nicola’s journey as mum to Tom who is now 21 as well as her work with Positive About Down Syndrome and why it’s so important. Nicola is extremely honest about her feelings when Tom was born in this chat, as well as how she feels about their life now. We discuss what led Nicola to set up PADS and the challenges families are facing who access their resources.

TW: We discuss termination after diagnosis in this episode so listen with caution if you feel that may be triggering for you.

You can find PADS here:

https://downsyndromeuk.co.uk/

It’s a special episode this week because I’ve got a couple on! Clare & Carl Graham join me to talk about their daughter Odette who has Down syndrome and cerebral palsy. We talk about the reality of how long acceptance can take, receiving a second diagnosis, comparison on social media and the impact all of that can have on your mental health.

Clare & Carl are both really open about how they’ve struggled mentally and what therapy looked like for both of them.

Carl mentions men’s mental health charity Sean’s Place in this episode who do incredible work with men living in Liverpool and Sefton. You can find them here:

https://seansplace.org.uk/

You can find Carl on social media here:

Instagram: @carlinstagraham

TikTok: @carlgsendad