Day +253

Posted on: 06/12/2014

Sad news last week. No sooner had we made contact with the handful of other families in the UK who have children affected by MLD, when we heard that one precious little girl, Harley (9), passed away. It was a heart-breaking reminder of how cruel and voracious this disease can be and how fortunate we are to have had a chance to prevent such a decline in Ava. I feel even more passionate about Dr Biffi's research into other treatments for more advanced cases of MLD and very proud that ArchAngel funds are boosting this crucial work. Ava and I have been busy as usual with our routine of school and daily therapy. We also had an orthotics review, as Ava is increasingly walking on her toes in order to ease the strain on tight muscles in her feet and ankles. There it was suggested that she wear splints on her legs to provide a permanent stretch on the muscles in question. However this kind of device can also result in loss of muscle tone in the calf muscle, so I felt this approach would be counter-productive. Ava was much relieved when I declined them, as she didn't like the thought of wearing them, as they are another thing which would make her distinctive from her friends. Instead we are now incorporating an extra regime of foot stretches and massage which is much more acceptable to her and in fact barely noticeable amongst all of the other exercises we do at home. Ava has been in a great mood, not least because of the building excitement about Christmas which is all around us. On Sunday the girls were invited to a special Christmas party at Harrods, via the hospital play specialist. Ava was thrilled to see Father Christmas and will hopefully be on her best behaviour for the next few weeks...