Earlier this year The Lily Foundation got in touch with me and asked if I would write something about how the charity have helped us since receiving Freddie’s diagnosis. They explained that this was for Global, and they own a group of radio stations from Heart and Capital FM to Classic and LBC. Global have a charity called Make Some Noise and every year they pick a selection of small charities who support children to be the beneficiaries of all their fundraising efforts. This year The Lily Foundation had put in an application and been successful. Global’s Make Some Noise campaign is only one day but last year they raised 3.5 million pounds so you can imagine the difference they can make to the 32 charities they have picked to support this year.
Anyway, of course, I was more than happy to help. The truth is The Lily Foundation have really helped us, as a family, but also helped me cope with Freddie’s diagnosis and me feel like I’m able to do something to help. Not long after I emailed what I had to say to the charity (along with some photos) I found out that they had picked a photo of Freddie and some quotes from my piece to use on their charities website to promote The Lily Foundation. As ever I just felt grateful I had something worthwhile to say/use.
I didn’t really give it much thought after that, and I didn’t even wonder what the process would be or know when Global’s Make Some Noise day was so it seemed a little out of the blue for me to receive another email (some months later) asking if I would consent to talk further to Global about the charity and our experiences. I was a little hesitant because previous experiences of being interviewed had left me a little nervous (I’m referring to Radio 5 and the ‘is Mito Donor IVF a step closer to designer babies?’ questions which floored me) but I was assured that this time they were on ‘our team’ and weren’t going to try to catch me out. Anyway, I said yes… because I always say yes to these things as it makes me feel like I’m actually doing something to help – however silly that sounds when I say it out loud.
After the email exchange I was expecting to be asked to take part in a phone call so to receive another email asking if the three of us could go to London the following week and do three radio interviews left me completely speechless. Thankfully (I think) James was actually on annual leave the week in question so we were able to make it work with such short notice.
I won’t go into too much detail about the day (because that would make this post so much longer than it already will be!) but Global really looked after us and made everything as easy and as accessible as it possibly could be with Freddie. The Lily Foundation, as always, did their bit too to make sure everything could go smoothly.
What was initially three interviews turned into a casual chat with Aled Jones and his producer, the went upstairs to the Heart studios and met Jenni Falconer and her producer for the first interview. James and I went into the room separately for our interviews. By all accounts mine was pretty lengthy! Now, those who know me might think that’s because I can talk for England but, after discussing with James later, we think I was asked more questions. No sure whether it’s because I was more emotional or I’m more use to talking about Freddie’s condition and our situation therefore the flow was better.
Straight from the Heart interview we went downstairs to Smooth FM and met Paul Phear and his producer. This time James and I went into the studio together whilst our host kindly sat with Freddie just outside. It was very bizarre and I’ve never done anything like this with James by my side before but it seemed to work really well. We know each others strengths. I’m better at talking about Freddie, the process of him being diagnosed and The Lily Foundation and James is much better at technical side of things so we were able to take the questions we knew we’d be better at answering. It was a very short interview compared to the previous one.
Once all the talking had finished it was clear Freddie was exhausted so our plans to head to Hamleys and the Lego shop turned into lunch with Liz, Michelle and our host before we left. Freddie slept through lunch. That kid is a complete trooper. He was so chilled out and happy. He spent majority of the day in his Swifty and, pretty much, had to amuse himself. Did he moan, no. Did he get upset, no. I still wonder who he gets his chilled out nature from because it certainly isn’t us!
On the train home James and I were both exhausted. It’s emotional having to recount the events of two years ago and talk about all the negative things associated with Mito. It’s hard and it’s draining. I think adrenaline gets you through but we both felt a bit low afterwards. I also think there’s an element of realisation that, although Freddie is doing well, this is our life, he does have mitochondrial disease and that is really shit. Being able to talk about it and raise awareness is the main way I know how to help. I can’t change anything for Freddie, I can’t change his diagnosis or save his life (unfortunately) but I have joined a bigger cause to try and help future people/children in our situation not have to go through this.
Anyway, I think I’ve rambled on for long enough. The point of this post was to just give a little background about how it all came about as a few people have asked me.
