Coronavirus concern - Image 1

Coronavirus concern

Posted on: 12/03/2020

Whilst we continue to have good press coverage of our NBS campaign, the news is now increasingly dominated by Coronavirus. It is particularly worrying to hear about the huge increase in cases in Italy and the tragically high number of deaths there. Last night I spoke with Ava's neurologist in Milan, as we are due there at the end of the month for Ava's 6 year post-transplant follow-up. Unfortunately the situation there is a difficult one, with intensive care units at Ospedale San Raffaele and other hospitals almost at breaking point. Staff from most departments are being re-deployed to help with the surge of critical Covid-19 cases. Although the gene therapy team continue to treat children - intervention in rare diseases like MLD is always a race against time - any non-urgent appointments are being cancelled, including Ava's follow-up. To be honest this is a relief. Regardless of how diligent the hospital staff are, I was extremely worried about the risk of infection in public areas, particularly in the airports and on aeroplanes. When I asked about potential risks to Ava should she contract the virus, it was explained that many people with existing neurological issues or a high level of disability (Ava has both) have been severly affected, including sustaining irrecoverable damage. It became clear that we should avoid taking Ava to any busy places uneccessarily. For that reason, we have today decided to remove her from school and therapy sessions as a precautionary measure, whilst we see how the situation unfolds.     

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