Kate Anderson: A Very Rare Diagnosis of Aicardi Syndrome

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