Greetings from Milan

We are back in Milan for Ava’s 30 month post-transplant checks. Yesterday she underwent 18 blood tests, gall bladder scan, thyroid scan, neurological examination and some gross motor function scoring. Today she has had eye, ear and limb nerve tests, brain MRI and liver MRI. All that will remain for the rest of the week are neuropsychometric tests and further gross motor function measures, as well as a meeting with the trial leader Professor Aiuti. Ava is in great spirits and very happy to see some of the lovely team here, including nurses Gigliola and Federica, psychologist Francesca, neurologist Francesca and physiotherapist Marina. We are sad not to see Dr Biffi and Dr Laura though, who went on to the Boston Children’s Hospital to commence a new Gene Therapy trial. We are praying that the tests show her disease remains stable. It’s hard to second guess, as her motor function is clearly worse, although we understood from previous visits that this was due to old nerve damage surfacing. We should know more by the end of the week. In the meantime, the weather is glorious and Ava is looking forward to our customary visit to feed the ducks and turtles at the Milano Due lake. 


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