Milan again

After a nasty cold and a quiet half term recouperating in the country, Ava and I are currently back in Milan. We are here for Ava’s 3 year post-transplant review, which seems quite incredible. We are actually a month early (the anniversary is 28th March), however it is helpful for the hospital to have Ava’s data included in the application for the Gene Therapy license, so we are happy to oblige. It also means that we are here at the same time as a lovely family from Philadelphia, with Ella (8) and Eli (11) also here for their GT follow-up. The girls are thrilled to have each other’s company and I’m delighted to see their Mum Becky again. Apart from the fact that we share a unique situation with MLD affected children, she is caring, smart, funny and a pleasure to be around. It will certainly make a tough week much easier. Yesterday we all spent 11 hours at the hospital for endless tests including blood work, nerve tests, brain wave monitoring, ultrasounds and x-rays. Today Ava and Ella both have brain MRIs, lumbar puncture, bone marrow aspiration and nerve conduction tests. We have no results yet, but our instinct is Ava’s disease is still stable, since we have witnessed no changes since our last visit. We will know more at the end of the week. In the meantime, the community physio and occupational therapists are working hard to put new equipment and routines into place for Ava both at home and at school. We will meet the therapists in Milan tomorrow and with luck everyone will be in agreement about Ava’s needs. We’re also quite excited to be trialling some clever communication technology for Ava which will help with her school work, so things are definitely looking up. 


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