Day +74

Posted on: 10/06/2014

Another sweltering day in Milan. Luckily we had the diversion of the hospital today, where everything was well. Ava's platelets continue their ascent and are up to 111,000! Dr Biffi said that since Ava is doing so well and requires no transfusions or IV medication, she will reduce our hospital visits even further. So now we are to report twice weekly and have blood checked only once weekly. After our blood tests today, we were introduced to a lovely Swedish family whose son will commence Gene Therapy in September. The boy is 10 and was only recently diagnosed with MLD, despite his symptoms being evident since the age of 5. Incredibly he has stayed stable for a long period and luckily was eligible for this treatment. Tragically, his younger sister was also diagnosed with MLD and she has experienced a more rapid decline. She is already wheelchair bound and showing noticeable cognitive impairments. We wish them much luck for their bitter-sweet journey ahead. Another stark reminder of how incredibly lucky we are to have had Ava diagnosed and qualify for this treatment.