Day +170

Posted on: 14/09/2014

Ava has done 5 days in school this week and loved every minute. I can't believe how quickly she had settled back in and how much energy she has had. We have continued with her therapy every afternoon, which is still crucial at this stage. However Ava was not at all happy to be picked up from school at 1pm for this and was desperate to stay in school longer. It is still early days, but I am delighted to see her so enthusiastic and determined and I have no doubt that she will be back for full days before we know it. This weekend Ava went with her friend Bella went to a 'Frozen' singalong and it really struck me just how far we have come since the early days of Milan when we watched this movie repeatedly and sang the songs on a daily basis. It feels like a year ago. In reality, it is less than six months, so Ava really is doing remarkably well. She may have issues with her balance and coordination, but we are blessed to be effectively carrying on as normal. The significance of this is particularly poignant this week, when I have been introduced to three families who have just had children diagnosed with MLD; two in America and one in Kent. They are all now pursuing the treatment in Milan with the same desperation we felt a year ago. I'm proud to say that at the same time, we continue to receive donations to ArchAngel, which will all go towards helping these children to get the chance of life which Ava has had and which they all equally deserve. Thank you all again for your continued support. Things are looking great for Ava, but MLD still continues to destroy young lives and families.