Day +197

Posted on: 12/10/2014

We are still waiting for some test results from Milan, however from what we know so far, we understand that Ava has had a degree of disease progression since her assessments in June. We are still in the window before the treatment can become effective (6-12 months post-transplant), so we always knew that this was a possibility. Ava has been struggling with balance and coordination these past few months, so we are now focused more than ever on therapy, in the hope that she can improve on her quality of movement. At home Ava is working super hard on her exercises but we are trying to do as much as possible which is 'every day', like stair climbing and running around the park. We are also lucky to have a wonderful Occupational Therapist, Chrysa at 'Maximum Potential', who makes sure Ava has a lot of fun in her sessions. I can't pretend that our schedule isn't exhausting, but I am ever thankful that we are not dealing with worse issues. Just reading about the daily heartaches that some of the other parents of MLD children have to contend with is enough to snap us out of any self-pity. Ava hasn't lost any major abilities and remains really motivated and very happy, which really is as much as we can ask for at this stage.