1 year + 22 days

Posted on: 19/04/2015

We have survived our trip to Morocco without illness or incident. I must admit to a moment of panic when we crossed a filthy, smoke-filled Casablanca airport, a far cry from the pristine sterility of Dubai. However once in Marrakech, we couldn't fault the standards at our hotel and I reminded myself that Dr Biffi had said "no restrictions" when she checked Ava's immune system last month. We have had a quiet week, largely spent within the hotel complex, which has beautiful gardens and a variety of facilities. We did venture out to the local market for souvenirs, although our trip was a relatively brief one after both girls were freaked out by a live snake being put around Ava's neck the second we stepped out of our taxi! Other than the fact that we were unprepared wardrobe-wise for the nightly temperature drop, having packed for a heat wave in Dubai, everything else has been ok. I can't help compare this to our last holiday, in April 2013, though. Ava had just been diagnosed, unbeknown to both girls, and Richard and I were in shock. We spent our week by the pool calling metabolic experts around the world, in a desperate search for some form of treatment we could pursue. It was then that we had our first conversation with Dr Biffi, at which point she turned us down for treatment, owing to very rigid trial acceptance criteria. It's hard to believe how far we have come since our last holiday, in many respects. Then Ava was sprinting around the hotel gardens, swimming brilliantly and disappearing into the kids club for hours on end. This holiday she is walking very slowly and with support, swimming with arm bands and not allowed into the kids club without an adult. It is without doubt hard work, but we are managing, grateful for what we have and praying for no further disease progression. Without treatment, Ava would have been in a far worse state today and we almost certainly wouldn't be enjoying a normal family holiday now.