Day +82

Posted on: 18/06/2014

Ava and I were out for a walk this morning, wondering how to fill our day when we bumped into Giada and her Dad, Luigi. Together we went inside the building with the Archangel Raphael on top, here you can see the DNA double helix spiralling towards the dome. It is symbolic of the belief in the unity of science and religion held by the founders of the hospital. This building is adjacent to where Ava and Giada had their Gene Therapy but houses the labs where they had their cells corrected, so it is a very meaningful place for all of us. We also visited the church inside and both girls marvelled the beautiful stained glass windows depicting saints and scientists. They held hands all the way and it was lovely to see them bond even though they don't share a common language. Afterwards we went to the hospital to meet Luigi's wife Pamela and their other daughter Valentina, who was undergoing various tests as part of an MLD natural history study. I have such deep admiration for them participating in this study. It is not easy for them or Valentina, but they are adamant that they must do whatever they can to help research into this terrible disease. Without people like them, the treatment which Ava has had would never have come to fruition. It has been a privilege to spend time with them. Quite an emotional day.