Day +54

Posted on: 21/05/2014

Today we were at the hospital from 9am until 3pm again. Francesca the psychologist surprised Ava with lots of glittery paints and glues and they did some some great artwork together. This was actually therapy for Ava's fine motor skills. Although the Gene Therapy trial is aiming to cure MLD, previous patients have not seen their disease arrested for at least six months post-transplant, so we must still endeavour to do as much therapy as possible in order to offset disease progression. As you can see, we are only 54 days in, so there is still some way to go for Ava. However so far, everything is going fantastically well, her immune system is building steadily - today neutrophils are 1400 - and her platelets are holding at a reasonable level.