43: Liz Day: Parenting a Medically Complex Child With a Very Rare Genetic Condition
The SEND Mum ClubShow Notes
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
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It’s the September reset and I’m back with a little post summer update and asking what you want to hear on the podcast moving forward. Get in touch via Instagram @thesendmumclub
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