4 year post-transplant checks

Ava’s checks in Milan went well. The levels of her new ARSA enzyme are strong and her brain MRI and nerve conduction remain completely stable. Ava’s Gross Motor Function is also stable and her IQ score showed an increase of 11 points. Doctors were pleased to see Ava interacting so well and agreed with our sense that her conversation has improved. Another bonus was the fact that I met 2 senior people from NHS England, who were at the hospital meeting the Gene Therapy team and looking at the facilities with a view to referring newly diagnosed patients of other rare diseases there. I had the opportunity to share details of the outstanding care which Ava has received there – and also to outline the disappointing fact that the NHS have been reluctant to support Ava’s required therapy programme, since it has been recommended by a non-UK hospital. I am extremely hopeful that their endorsement of Prof. Aiuti and his team will mean that their expertise and recommendations for Ava will now be given the respect they deserve.

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