Day +317

Posted on: 08/02/2015

Apologies for the lack of updates, I have been holding out for Ava's December tests results, which we have been expecting for the last two weeks. We finally received them on Friday and the good news is that Ava's engraftment (reproduction of corrected cells) is stable. The fantastic news is that her ARSA (the enzyme that Ava was missing pre-transplant) level is now "above normal" levels!! The fact that Ava is producing large quantities of ARSA theoretically means that MLD can no longer attack her system. It can take a year for Gene Therapy to become fully effective, so this is a wonderful affirmation that everything is going according to plan. Ava has continued to be well and happy. She is doing lots of arts & crafts at home, which is both fun and great training for her fine motor skills. This weekend she particularly enjoyed making this super ballerina theatre, a perfect Christmas present from our lovely friends Juliet, David, Sam & Jack. I have been swamped by assessments, meetings and an astonishing amount of paperwork in the process of applying for an Educational and Health Care assessment, or 'EHC' for Ava. This is to try and secure some government 'special needs' funding for our school. When Ava returned to school in September, Francis Holland immediately put her wellbeing first and recruited a teaching assistant solely dedicated to her, without any funding in place. Let's hope Westminster council will show us the same kindness and support.