The SEND Mum Club

43: Liz Day: Parenting a Medically Complex Child With a Very Rare Genetic Condition

1 h 4 min · 23. mar. 2026
episode 43: Liz Day: Parenting a Medically Complex Child With a Very Rare Genetic Condition cover

Description

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/ [https://rarechromo.org/disorder-guides/] You can find Liz on Instagram @medical_mumma_kickingcask

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episode 45: Christian Laing: Growing Up With A Brother With Down Syndrome, Setting Up Stand Out Socks & Why There’s Still Such A Long Way To Go artwork

45: Christian Laing: Growing Up With A Brother With Down Syndrome, Setting Up Stand Out Socks & Why There’s Still Such A Long Way To Go

In this episode I talk to Christian Laing – co-founder of Stand Out Socks – about what life was like growing up with a sibling with Down syndrome. We discuss how that impacted Christian’s upbringing, how involved Ross was (and is) with Christian’s friends, and what Christian’s thoughts are now looking back as an adult.   Christian, Ross & Christian’s partner Natalie founded Stand Out Socks (you may have seen them on Dragon’s Den) because Ross was struggling to find paid employment. Christian talks about how many people with additional needs end up working for free, or even paying to work and why it’s so important that changes. All the people that work at Stand Out Socks have Down syndrome and all of them are paid for every hour they work. I was absolutely shocked to learn how rare that is.   You can shop the socks and find out more at www.standoutsocks.co.uk [http://www.standoutsocks.co.uk] and follow them on Instagram @standoutsocksuk

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