Day + 88

Posted on: 24/06/2014

We had no plans this morning and the weather was forecast for thunderstorms, but we took a chance and ventured up to the lake, where it was warm and sunny as usual. Back at the hotel for lunch Ava had a lovely surprise when nurse Federica walked in. We haven't seen her since we were in isolation, where she was really caring towards Ava and made her laugh a lot. Ava lit up instantly today when Federica remembered their special wave, like our toy Olaf with a broken arm. We had another neurological assessment this afternoon and afterwards we met another of Ava's MLD Gene Therapy family, Ana Carolina from Brazil. Ana Carolina is 4 and had her treatment at the age of 1. She is like many of the previous trial patients in that she was treat pre-symptomatic, after an elder sibling was diagnosed with MLD. Her older brother is still with us, although the disease has heartbreakingly robbed him of most of his abilities. Ava Carolina however is doing brilliantly well and no different to any other child her age. It is absolutely wonderful to see children a few years post-transplant, it really does give me hope for Ava's future. Tonight the forecast came good and we watched an incredibly dramatic electrical storm whilst making more plans for home. 6 days and counting!