32: Kate Anderson: A Very Rare Diagnosis of Aicardi Syndrome
Update: 2025-12-08
Description
Kate Anderson is my guest this week, talking about her daughter Florence who has Aicardi Syndrome. Kate talks about exactly what that means and what a typical day looks like caring for a medically complex child. We talk about the toll of frequent, long hospital stays due to repeated chest infections and the importance of accepting help from people. Kate is also really honest about her desire to have another child to experience the typical version of motherhood.
Kate is keen to raise awareness of North East based charities that have helped her family. You can find them all here and what Kate has used them for:
https://northeastsightmattersltd.co.uk/ for day trips
https://www.stoswaldsuk.org/ for respite
https://thecharlieandcarterfoundation.co.uk/ for financial support
https://www.thesunshinefund.org/ for specialist equipment
https://www.rainbowtrust.org.uk/about/where-we-support/north-east-team for respite
https://www.sickchildrenstrust.org/ for accommodation while Florence was is in hospital
https://macs.org.uk/ for emotional support and meet ups
https://www.sense.org.uk/ for monthly visits and trips
https://www.elifarfoundation.org.uk/ for a specialised car seat
https://www.thedaisygarland.org.uk/ for sats monitor and epilepsy support
https://www.rnib.org.uk/ for support for Kate & George from a family worker
Kate is keen to raise awareness of North East based charities that have helped her family. You can find them all here and what Kate has used them for:
https://northeastsightmattersltd.co.uk/ for day trips
https://www.stoswaldsuk.org/ for respite
https://thecharlieandcarterfoundation.co.uk/ for financial support
https://www.thesunshinefund.org/ for specialist equipment
https://www.rainbowtrust.org.uk/about/where-we-support/north-east-team for respite
https://www.sickchildrenstrust.org/ for accommodation while Florence was is in hospital
https://macs.org.uk/ for emotional support and meet ups
https://www.sense.org.uk/ for monthly visits and trips
https://www.elifarfoundation.org.uk/ for a specialised car seat
https://www.thedaisygarland.org.uk/ for sats monitor and epilepsy support
https://www.rnib.org.uk/ for support for Kate & George from a family worker
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