Day +79

Posted on: 15/06/2014

Today was very wet so we spent a happy Father's Day indoors drinking smoothies, watching movies and chatting about our plans for the summer holidays. We tried to keep these images in our head as we said goodbye to Ava's Daddy and Angelina, which is never easy. Thankfully we only have a few more weeks apart. After dropping them at the airport we headed back to our hotel, where we met a lovely Italian family who have two gorgeous little girls, both also affected by MLD. Jada, who is 3, had her Gene Therapy 2 years ago and the family are in Milan for her regular post-transplant checks. She appears to be doing very well. However her 5 year old sister Valentina is not so fortunate. Her disease is already advanced and has robbed her of many abilities. It was utterly heartbreaking to see this very beautiful girl so incapacitated. It is another reminder of how incredibly lucky we are to be here and to be planning a positive future for our family.