Check-up time in Milan

We are back in Milan for Ava’s 3.5 year post-transplant assessment. The schedule is less punishing than usual, since now we are past the 3 year mark so some follow-up visits will be less invasive. This time Ava has only had blood tests, EEG, gross motor function and neuropsychometric assessments. No brain scan, lumbar puncture, electric shocks or ear and eye nerve tests, which is quite a relief. Ava has done really well and everything is stable, with some small improvements in trunk control and cognition. We are not expecting any big leaps forward for quite some time, since her nervous system is undergoing major change and will likely be in fluctuation for another few years, however it is reassuring to know that we are heading in the right direction. It has been lovely to catch up with nurse Federica, who is home from saving lives in Iraq for a few days, as well as nurse Gigliola and Dr. Laura. They were all here for us during Ava’s transplant and we remain ever grateful for their kindness and support. Today at Ava’s physio assessment we met Mohammed from the Lebanon, who was the first child in the world to receive Gene Therapy for MLD (Ava was no.12). Mohammed’s two elder siblings died from MLD and it was incredible to see him so well 7 years post-transplant, a real testament to the power of this treatment and the life-changing possibilities it can deliver.


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