Day +183

Posted on: 29/09/2014

Today we flew back to Milan for Ava's 6 month post-transplant checks. I was feeling flustered about being late on our way to the airport when I realised that we were driving through Ovington Square. We were taking the exact same route that we had done on 12th March, when Ava and I were on our way to Milan to begin Ava's Gene Therapy. I was struck then by the proliferation of cherry blossom and how the emerging springtime was symbolic of our positivity and hope for a new beginning for Ava. Today that memory made me realise just how much stress and anxiety we have been relieved of since then. Yes, I am nervous about what this week's tests results might reveal; that Ava may have had some disease progression since the transplant and that she may in fact never regain the balance and coordination which she is currently lacking. However, compared to the prospect of what lay ahead for her without this treatment, today we really have no problems. Whilst I remind myself that there are worst things to contend with than lateness, I am also inwardly glad to be having worries which feel like normal, every day worries. What a difference a few months has made. We arrived to a warm welcome by the ever friendly staff at the Hotel Rafael and immediately met Talleulah and her family. Talleulah and Ava were both shy but it was remarkable how many similarities they share in terms of mannerisms and outwards signs of MLD. Ava was very happy to have a made a new friend and it will be lovely to share their company this week. Praying that they will be as lucky with Dr Biffi as we were.