My podcast conversation today is with Yvonne Milne, MBE, mother to Clare and Founder of the Rett Syndrome Association UK, now known as Rett UK.
Clare, now 39, was the first person to be diagnosed with Rett Syndrome in the UK and since that day, Yvonne has made it her mission not only to give Clare a healthy a life as possible, but to support other parents and families living with Rett Syndrome all well.
Through this enlightening conversation, Yvonne and I cover so much, about finding a diagnosis for Clare, starting a patient organisation in the days before the internet and some of the things Yvonne and her husband have put in place to ensure that Clare stays as well as possible.
We talk about parent power, respiratory issues, aspiration, chest infections and what it was actually like for Yvonne and Clare, going to Buckingham Palace and getting that MBE.
For me, as Co-founder of another Rett organisation, this conversation was all at once, funny, sad, heart-warming but above all, welded in responsibility; the responsibility each of us has to our daughters and the pain of other families’ experiences which is invariably carried with this all-encompassing, deeply personal work.
I am so grateful to Yvonne for taking the time to speak with me. I hope you enjoy the episode. Please let us know by rating the show on whatever platform you listen on or sharing/commenting via social media @reverserett
Thank you for listening!