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

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

Liz Nuttall 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