Ava’s results in Milan were generally positive. All of the key indicators of the disease – brain MRI, nerve conduction and IQ test – were all stable. As always, this was an immense relief. However her gross motor function has declined again and it would appear that the previous nerve damage is still coming to the surface. So it is imperative to keep Ava moving and weight bearing, even though this is inevitably more difficult for her. Not walking enough brings further complications, of reduced core stability and extremely tight ham strings, which in turn causes muscle rigidity and a bad walking pattern. Whilst the physiotherapists recommend drugs to relax Ava’s leg muscles, the neurologists warn that this would further weaken her trunk muscles, which she requires for walking. We are really not keen on giving her drugs anyway, so we have decided to try some natural approaches instead. After saying goodbye to the fantastic medical team in Milan, we have come to the Paracelsus Clinic Al Ronc in Switzerland to investigate the latest biological medicine. Here we are not allowed mobile phones or wifi, so will update again after a technology free week!