So Thursday evening I was playing with Freddie when Liz from The Lily Foundation called me and wanted to confirm that Freddie’s condition is maternally inherited, she also wanted to check that I’d seen the news about mito donor IVF having it’s license granted. I had. She then went on to ask whether I would consider doing a radio interview, alongside Sir Doug Turnbull, about my thoughts on mito donor IVF as well as talking about Freddie. She asked if I would help people understand why this preventative IVF was important. Obviously I said yes. Since Freddie became sick I vowed to help others and felt honoured Liz had asked me.
My Thursday evening was chaos. I was speaking to somebody in the BBC Radio 4 production team on and off. She wanted to find out more about me and Freddie, then work out the logistics of me being on the radio. There was no way I would be able to go into London on such late notice. She arranged for me to be taken to BBC Suffolk where they could patch me into the show. Then the time slot kept changing so I kept receiving calls/texts about the car arrangements being moved around. Once everything was sorted I was then called and asked to do 5 Live an hour earlier – I ended up declining that. Partly because I didn’t fancy being up at 4:30am, picked up at 5 then returning home after both interviews and having to look after Freddie all day whilst James went to work. I also spoke to Liz a few times because I was ridiculously nervous.
Seen as everything was so last minute we decided not to tell anybody. Firstly, I didn’t want the press and secondly, I didn’t want the world presuming we were actually having mito donor IVF – we’re not! – I was asked to do this purely because I fit the category of women that would be eligible.
Needless to say I slept terribly Thursday night. I thought making notes of things I wanted to get across would help but it appears my head was still full of all sorts. I’d been awake hours before my alarm went off at 5:30! My car was at the house promptly at 6am. Off I went with my flask of coffee and the sick feeling in my tummy.
I arrived at BBC Suffolk much earlier than I was needed and I was led to a room the size of a cupboard with a microphone, head phones and a clock then left to my own devices. I don’t think I’ve ever been so nervous. I kept glancing at my notes. A lady came in and asked me to put my headphones on so Radio 4 could dial through to me. A voice asked me to count to ten then gave me a 4 minute countdown until we went ‘live’. It was all over very quickly and my car was already waiting to take me back home.
I didn’t know the questions in advanced but I was told they want to know about Freddie’s condition and I was also asked what I would say to people who considered mito donor IVF one step closer to creating ‘designer babies’. I’m glad I was asked that question as my response made me proud of myself and also helped me articulate myself more clearly when we were live on air and John Humphrys used the term.
I called Liz in the car home to ask if it was okay. She said I was incredible and she knew I would be. I feel so flattered she thinks I did the cause justice. Mum and James greeted me with hugs and compliments when I got home. I didn’t want to listen to it back as I knew I’d only criticise myself, my answers and beat myself up for things I should’ve said but didn’t. Later on Liz called me to say Sir Turnbull had emailed her to say how impressed with me he was, especially considering the difficult questions I was asked. She also said a media representative from The Wellcome Trust wanted to talk to me. I spoke to the lady, she was lovely and asked how I felt about the difficult questions I was asked. I explained, in all honestly, I didn’t find them difficult because I’m use to talking about Freddie and his condition so it doesn’t upset me. She said I’d impressed them a lot and asked if I would be prepared to do more media. I have agreed, although there’s nothing in the pipeline.
I feel very overwhelmed by the support from everybody (who knew so many friends and family listen to BBC Today!). It was a privilege to be asked to represent, not only Freddie and the work Sir Doug and Newcastle do but also all the mito families. It wasn’t just about supporting the new IVF it was about raising awareness of these awful diseases and trying to get people to understand how terrible they are. We are lucky because Freddie isn’t at his end of life stage yet, he’s still happy and has quality of life, there are lots of children like him that don’t. I did it for them.
